I have hEDS, and a 3 yo daughter. One of her first sentences was "Mommy no chase. Mommy has a hurt." It makes me so sad that I can't play with her more physically, but it does lead to some really creative and sweet moments: "you want to put makeup Mommy while she's on the couch? Go for it."
She sounds so adorable and understanding! Apparently I was similar as a young child, I learned to read when I was 3 and a half because mama was tired after work and I decided that I won't bother her with reading to me 😂
It's so interesting to hear Claudia be so understanding and empathetic. I'm chronically ill and I feel like most people I know don't really understand it so it's lovely to see such conversations:')
You'll find your people in time ❤ My current boyfriend understands without me having to explain in detail. And he loves me for me, all of me. He doesn't love me and reluctantly put up with my illness which is how it felt with my ex. He doesn't mind the accommodations I need because to him they're just a part of being with me, he has never known me any other way, whereas I know how I used to be and I miss it. I think it helps that he has adhd and autism so he gets overwhelmed and needs his own different accommodations which don't bother me at all. I'm physically disabled and he has a busy noisy brain so I do the mental work of organising us, reading maps, planning meals, and he does the physical work of carrying my bag for me or pushing my wheelchair or putting the dishes away. It balances out and neither one of us feels like a burden.
That’s what love looks like ♥️ I don’t think it’s worth settling for anything else. My husband and I are both AuDHD, but I suffer from more chronic physical ailments than he does. He takes very good care of me 🥹
When we are chronically ill we need amazing people who support us. We will lose many people, but stick with those who truly understand. I have three people in my life who support and understand me, and that already makes a world of difference
I'm a full time wheelchair user with a biped wife, and hearing you two talk about your parenting is incredibly helpful. There are so many times I think, "How could someone like ME be a good mom?!" and then I see Jessica and wouldn't dream of thinking that about her. Thank you both for showing me how to be kinder to myself, and to have hope for my disabled parenting future. 💞
I look at parenting slightly differently. Neither of my parents have disabilities, I was blamed by my dad for my disability (cp from birth) for being lazy and wrecking the family. My mother allowed it, in part because she felt like she had no choice but to stay with him, and also because she was able to reframe things in her mind once my dad mellowed. They love each other very much but he is a bully and a narcissist. Parenting is for me not about shortcomings from disability, class or opportunity (among so many factors) rather its about insights, self awareness and the ability to acknowledge mistakes and communication. All of which we as disabled folks often have more in our kit bag than able bodied people. I am not a parent but I know my life would have been so much easier and less traumatic if I had parents that accepted me. Kids who grow up around us see the beauty in difference more clearly. Good luck to any future parents follow your dreams. Real Love and acceptance is worth so much more to the kids and the world, than having non disabled parents.
If we fast forward 20 years, we see Rupert as a man grateful that sign language is as natural as spoken language, to whom empathy is as natural as breathing, with wisdom and experience that some go their entire lives without. He is one lucky little boy!
*Regarding Jessica considering ADHD (and autism) disabilities- yeah I used to not think ADHD was a disability until it began severely impacting my physical health 🙃 thank you for saying this!! I'm sure you'll change somebody's life
As someone with ADHD, autistic traits, and several chronic illnesses, I can tell you that I personally feel that ADHD / autism / neurodivergence is both part of normal human diversity and also can be disabling. And since disability is not a dirty word, It's okay to admit that these things are both disabling and potentially empowering. You can learn about yourself and the traits you have, and connect with other people with similar experiences who were born with that specific variety of being human. I suspect that for some people, when they say being neurodivergent isn't a disability, a major factor is trying to counter societal ableism and pushing back against the narrative that neurotypicals are normal and good and neurodivergents are abnormal and bad. But it's okay to be proud of who you are and your equal worth as a human being, and also be empowered by the concept of disability, accept the fact that it's not the dirty word that abled society says it is, and the fact that you have disability-related struggles and needs, and there are ways to help address them.
something that breaks me is that in my country only recently ADHD was brought to attention, and is so rare to someone considers it a learning disability that I oftentimes feel invalidated when I'm struggling, because here, more often the not, the reaction I (and others ADHDers) get is "oh c'mon everyone struggles with that, stop being dramatic. not everything is a disorder"
@Lórien Braga In the US, ADHD is classified as a developmental disability because it affects more than just the way we learn; it affects every part of our lives!
I have ADHD and Autism and personally feel they are disabilities to me, but I wasn't raised with that thinking so I didn't actually start to call myself disabled until I had physical health stuff going on as well. And of course now I recognize how much they're connected (it's also why I call them neurological disabilities, just brain stuff, not exclusively thinking-related but all sorts of things. like how we experience sensory input and all sorts of stuff)
I remember an older video where you were talking about how kids are very understanding of their parent's disability, but my toddler was in the middle of the phase where she'd be super frustrated by it so I was like... I wish 😂. Now she's 4 and she's way better at understanding! She will often even suggest alternative activities, like if I say I can't get up right now she'll be like "ok I'll sit with you and we can read a book" or whatever. So I'm sure Rupert will get there!
I have a mobility disability and chronic pain and I totally understand the urge to rush rush rush to get things done on a good day for fear that the next day will be a bad one...only to guarantee yourself a bad day because you did too much! I'm much better at pacing than I used to be, and much better at going "today I brushed my hair and that's enough."
I do almost all of my schooling online so if i get behind (which i often due bc my disabilities do not care about due dates) i almost guarantee myself a migraine day because of looking at screens
100% yes to autism being a disability. It helped me so much to accept that some things are just harder for me (after my diagnosis at 26). It makes me put much less pressure on myself to perform at an intensity I just can't most of the time and my mental health has gotten way better since
I'm a cis guy with hypermobile EDS (*very* much in the minority here), as well as having heavy dysautonomia. It has very much made my life a lot harder and different than I expected. I did manage to finally graduate from uni, but now I'm back at home trying to figure out my next path forward. Keep up the amazing work.
I don't have EDS but suffer from other disorders, and I want to write about a guy with EDS. It seems to be a lot rarer in males, do you know why? Is the health care biased against you with this disorder because you're a guy? Also, from one person struggling to another - don't push yourself just for the sake of pushing. I graduated high school and uni after many years, fought really hard, but to what use? I'm unable to ever work. I could've used that energy to do better things, like find close friends, get the correct diagnoses and treatments, make my dream journey to London, or just try to be happy in the moment. I don't know you, maybe you are able to work, but I regret pushing through all of that for no reason just to try to be "normal". It's useless for me today at age 35.
I work with children and it kinda feels to me that in these moments, when he "pushes Jessica away" he wants to "test" if you still care enough to try and make up with him
My partner jokingly asked a few days ago what would happen if they would put my conscious in a fully healthy body? I like almost panicked at the thought, because I am so used to dealing with multiple chronic illnesses and disabilities from birth, and I don't even think about most of my coping mechanisms, they are so ingrained into my system. I wouldn't know what to do or how to deal with a fully healthy body and mind. I would get used to it pretty quickly I would think since being disabled kinda forces you to become very and adaptable, but realizing that the first thing I would do would be panicking made me laugh.
I have MS and my main issue is fatigue. Maybe once or twice a year for a day or two, I have a peak of energy where my fatigue is not gone, but it improves significantly. And oh my God, I can do so many things, being so productive. It's like having superpowers. I always wonder if all my days where like that, all the things I would be able to do. I also wonder why "normal people" don't do more things. And I guess that's because they lack of experience that someone that's chronically ill or disable has in ,you know, dragging themselves day after day and pushing through again and again. It's like someone who is used to train with a lot of weight vs someone who has never had to lift more than a few pounds.
I have, to some degree, had this experience. One by one my issues have been appropriately medicated and routines changed, so issues that were debilitating are mild now. It's an intensely weird experience and it's taken a lot to adjust. This is one side of chronic illness they really don't talk about!
Sounds about right for that age. He'll smooth out soon again. Especially when his brain develops enough to really grasp the idea of a pain day (snide society marks aside), usually between 5 and 8 is a real boost in this, regarding brain development. And he's already got some foundation in this. He just needs to connect that ouchy isnt his fault, and that mumma wouldn't punish him at random. And it sounds like he's already halfway there 🥰
(its weird to say that other people in pain can feel like a punishment to people not in pain, but... Sometimes as you know, people get stuck there and keep processing it like that)
@@ninjakitteh9095 No I get what you mean - It's not a punishment in the sense of getting yelled at or grounded, but it can feel like someone is avoiding you, ignoring you etc. when something isn't their fault and that can feel like a punishment. It takes some work to get out of the mindset and realize "Oh shit I do the same thing when I'm in pain / sick and I'm not trying to punish anyone so why would they be trying to punish me?" Idk if I explained this that well but I get where you're coming from
Thanks for sharing this. I'm disabled and chronically ill and would have loved to have videos like this available when I had a young child (my boys are 18 and 19 now). What I will say is that regarding a child having grown up with a disabled parent, I've found that it's made our children have even greater empathy and understanding for others, especially those with any kind of illness. My oldest was my carer for many years when I was a single mum and he talks fondly about those years, which helped the guilt I used to feel about it. He tells me he's glad he's had that experience although he obviously appreciated my now husband and stepson also being around to help later. I know he's the amazing man he is in part because of being raised by a parent who is disabled. I have no doubt the same will apply for Rupert, especially with the loving example he has in Claudia. Keep up the great work with this channel and spreading awareness ❤
Amen; Watching this whilst up, unable to sleep from pain at 5am, 10 days past my second surgery of the year for pain (5-7 a year for the past five years), fucking thank you for acknowledging the being productive with a dark cloud. I have a now 14 year old, I've been a chronically ill single mother their whole life and I really struggle with the guilt sometimes.. like when they have to force me to bed because I'm trying to push through too much... it gets easier once they start talking, and the goblin has great empathy and understanding of differences, in part because they were raised by someone disabled. Y'all are beautiful, you got this. I've got a rare strain of a degenerative disease, CMT (Charcot Marie Tooth), Endo, PCOS, and then several really damaging sexual attacks, combined with medical negligence, means I'll be having the 5-7 surgeries a year for the foreseeable future. Mainly botox to paralyze the constant contractions, which helps hugely, and ketamine infusions, plus stitching and repairs to some irreversible damage that due to my physiology means that I don't heal correctly and reject any foreign body like mesh or even stitches, so they need to get replaced every 8-10 weeks so they don't abscess and turn into worse scar tissue. . What I find so hard is the compassion fatigue. I hate to talk about it because I know its boring to people, but it takes up so much of my life, and also my many... spicy ND brain means I'm terrible at lying when someone asks how I am.. because I always want a real response, I still struggle to understand in the moment most people want an "I'm fine" response. So that you have each other to talk to, and such a beautiful and understanding relationship, it makes me so happy to see. Thank you for sharing so honestly.
As the parent of a kid with a hand difference, I’m so glad there are kids like Rupert in the world. Mine is 13 and generally good with his difference (symbrachydactyly-which my autocorrect recognizes!), but there were a couple rough spots-always with either kids who reacted poorly, or got grabby, or adults who tried too hard to “help” by doing things for him instead of helping him figure out how to do things his own way.
Claudia and Jessica are relationship goals no matter whether you are straight, gay, lesbian, or whatever else people want as their relationships. Both of you keep being awesome! Lots of love from Australia!
I find what you say about autism and ADHD so important - as a chronically ill autistic person, I so often feel alienated within the neurodivergent community because people are like "they're not disabilities, that would be STIGMATISING!" And quite apart from the fact aspects of my autism are disabling, I'm like, "What, and your haste to distance yourself from disability, and from being in community with fellow disabled people, isn't the very essence of disability stigma?"
its really funny to me that i entered my current relationship at 15 as the "Able Bodied One", as my partner has POTs & UC & other health issues. But now we're in our early 20's and I have an Ehler Danlos-like hypermobility connective tissue condition, long covid, I now know i'm autistic, and mystery heart conditions,, so fun :') But for real, if you're disabled and your partner isn't and they aren't being as supportive and loving as Claudia,,,, tell them to step up their game. I was unknowingly disabled & 15 years old!! and was so conscious of how far my partner could walk, if they needed to sit, what foods they couldn't eat, etc. It's literally so easy not to be garbage and you deserve someone who treats you like a person, no matter how sick/disabled you are .
I like Claudia's analogy about diagnosis and shoe size! I've seen doctors refuse to diagnose EDS especially if you already have another diagnosis like fibromyalgia/CFS because "you can't do anything about it anyway" which even if it were true (which it isn't for everyone!) the validation and ability to understand oneself better in itself is hugely beneficial.
My girlfriend has chronic pain and joint issues and seeing content like this is really encouraging because it's reassuring to see that you've built a life together with Jessica's disabilities. It makes it seem less impossible and less scary that my girlfriend and I will be able to build our life together and be happy and do things that we love, even when we have to deal with the bad stuff like the days when she wakes up and is in pain. We don't live together yet and we're both in uni so we've got a long way to go but we can make it.
I love the conversation about how thinking about something as a disability can help manage it. I’ve always been told I’m the most neurotypical of my family (not a high bar) but noticing autism signs in myself and actively using my autistic sister’s mental health strategies has helped me a huge amount. On some level, it doesn’t entirely matter if I “have autism” or not, using that word helps me feel better about myself and take active steps to help myself operate.
The conversation between 11:35 and 12:16 is so huge. I'm a university student right now and I always feel like I have to push myself to do as much as possible while I'm well (laundry, meal prep, deep cleaning, working ahead on school, going out with friends) for when I inevitably have a flare-up of some kind. It makes me feel so stressed even on "good" days because I feel like I have some kind of quota to meet.
And this definitely applies to mental health conditions too. On days I feel good and one of my mental illnesses isn't acting up, I feel so much pressure to do everything and enjoy everything. Because soon I won't be able to enjoy anything. It's such a horrible way to live. I get scared of my own damn mind taking away my ability to be happy or productive. It is and feels like a physical thing coming to stop me. But it's not a way to live to force yourself to do EVERYTHING just because you're having an ok day or week. The pressure is torture.
I have EDS and just had a child. It's so difficult just to take care of myself and him. I'm dreading when I have terrible days and cant function. It's so nice to hear how you handle things, and I hope you have more good days than bad. ❤
I'm a mom of 5 with multiple conditions that occasionally cause me to be on bed rest. The toddler rejecting you when you come off bed rest is so familiar to me! I think all five of mine did that at Rupert's age😂
Lovely video! It's wonderful how comfortable you and Claudia are sharing this part of your lives. I'm so glad you included autism/adhd as disabilities, because every time I try to say my autism is a disability around my family, they get upset, using "differently-abled" or saying not to limit myself with labels. Although I agree that labels don't define people fully, they are still helpful when I struggle. Do you think you could do a video giving advice to those of us who live with our parents/guardians who aren't supportive of our disabilities/chronic illness? I'm also physically disabled and have no idea why, and have been judged for using a mobility aid :( It's hopeful to see that there might be people out there who'd love and support us just as we are. Well wishes from an American viewer!
I so appreciate hearing your perspective on this. I am disabled (juvenile rheumatoid arthritis), and have an abled fiance. He is so incredibly understanding, so different from my past relationships, and I hear a lot of what he says to me in how Claudia talks about your disability. Thank you for sharing. I've also talked to my partner about switching bodies sometimes! He says he would love to relieve me of the pain for a while and I have to remind him that I'm actually much better equipped to manage it because it's my everyday existence. People with chronic pain really are so resilient and sometimes it's important to take a step back and remember what we push through every day. Much love.
7:15 one of the hardest things about being physically disabled for me is not being able to explain to my preschool age nephew why i can’t always play with him. sometimes he’ll pretend to be a doctor and give me “medicine” and it’s so hard to explain that it’s not that simple. he’s one of my biggest motivators for sure, and i hope when he’s older he’ll understand how important he is to me :)
This video came on a really good day for me because I had an argument with my mother who said I wasnt disabled because I am not missing a limb and me just there having spent a lot of time coming to terms with being disabled even though I dont look 'disabled' and it's really validating to hear this If a government application famous for denying disabled peoples first application and requiring appeals, approved me on the first time, then I should not be questioning it 😂😂
I had a thalamic stroke, which damaged my nerves, "everyone's nerve relay system." My pain on a good day is a 100, which I've learned is my new "normal. "I feel it, its always present, almost 2 years. A bad pain day is where I can't function and stare into space trying to find a safe place, I'm being tortured, burned alive, electrocuted, and frozen. People don't understand and don't believe me. My heart, hubby Brian, has been a wonderful husband and caregiver. He does everything from cooking and taking care of my basic needs. If I didn't have him I don't know what I would do. You guys remind me of us. Is it easy having a marriage being on either side, disability or caregiver, not at all. But when you love someone and have that communication, you do make it work. ❤
Thanks for talking about this, having eds, autism, and adhd is a wild ride, and it’s only been known to me that that’s what I was dealing with for a couple years now. I’ve been watching your content for much longer than I’ve had a diagnosis of any kind and it’s been instrumental to my understanding of myself and conceptualizing a future where I can be who I am and also be who I want to be. 💛
I just wanted to say that I am grateful that I have followed you for so long, because that helps me help my gf accept and live with her own disability. She's an artist that cannot use her hands anymore and sometimes, it's hard. We met 2 years ago at the beginning of her still ongoing journey to the right diagnosis and treatment, and I feel like I couldn't have been better prepared than with you as a teacher. Thank you
Jessica, I have an acquired brain injury (and am a single mum), and many times I can't handle a lot of sounds in the evening (among other things). My daughter is now 3 and a half, and I'd say at about 3, they get a bit more understanding, are able to reason a bit more, comprehend deeper. My daughter has a lot of empathy, and she is never annoyed at me now for my limitations. So even if it's hard for Rupert to understand sometimes now, eventually he'll completely understand and will likely have compassion and empathy (more so than many adults). My daughter knows that I wish I could do all the things with her that she wants to do, but she accepts that I have an injured brain that's trying its best. Love and hugs to you guys xx
11:39 This describes my mental conditions very well! I have bipolar disorder and ADHD (+more) so my mood and energy levels vary insanely much. One day I'm super tired and have self-destructive thoughts and there's no point with anything, and other days I'm constantly on the go and doing 10 times more stuff and social and happy. But I always live with that dark rainy cloud over my back, I know it will end any time. And often, the more I push myself during my happy, energetic days, the longer and deeper low I suffer afterwards. I'm on medications so I don't have full-blown episodes as often any more, but my life is constantly going in cycles. I plan social things when I'm up and happy, and then I shift and become tired and cannot follow through with my plans. Incredibly inconsistent life, for decades. You love those days with energy and try to squeeze out every little drop from it, maybe you won't experience it for another month? But then you pay for it a few days later, and you hate your life and see no point in anything. No wonder I'm unable to work or study! It's a full time job for me to just live alone with my cat. Just because I stay out of hospital wards nowadays doesn't mean I'm a functioning human being, lol...
Having your child reject you like that must be so hard, if I experience that with my future child I would find it heartbreaking (I do have ADHD though, which comes with extreme rejection sensitivity) but apparently it is a very normal thing for toddlers to do
Yesterday I finished a project I was very invested in and absolutely wanted to accomplish so I "pushed through", but by the time it was done and I started winding down I got hit with such a massive migraine, nausea and vertigo mix that was basically my body going "why would you do this to me." It was a little discouraging cause I couldnt savour the accomplishment of having gotten something done since I was too busy dealing with the aftermath. Luckily it only lasted the evening and I didnt end up in extended bedrest, but all of my fears of doing literally anything are founded in that dynamic of pushing through, paying the price and then being afraid of starting it all over again. It's paralyzing.
8:20 so you were mentioning that your nearly 2yo sometimes kind of rejects Jessica. That is pretty developmentally normal. Kids often go through time periods of deeply preferring one parent over the other. It can be really upsetting and stressing for both parents. It will pass. I suspect it has less to do with who is available when and more to do with age and stage stuff.
You two are my favourite couple on UA-cam. You're both so real, down to earth and very sure of yourselves and articulated. Just generally very lovely human beings ❤
Love your videos. Not sure what to say but I wanted to leave a longish comment for the engagement. Keep up the good work! It is amazing to see people like you out there living happy lives. Little Ru is adorable.
Jessica is looking lovely and Claudia looks amazing in that colour, but what shines the brightest is the love and compassion that they show ❤. And it is thanks to Stevie that I discovered that I have hEDS. I got my diagnosis in August of 2019, 1,5 weeks after seeing her video about it (my GP is AMAZING!).
I'm autistic and I do consider myself disabled, because there are times when I can't do certain things, or it takes me longer to recover from events than it does for non-autistic people.
These videos bring me so much joy. I am a freelance creator myself (print and written media), and it can be both a blessing and a disadvantage to have a chronic illness that requires balancing self-care with sticking to my goals. I really appreciate both of you
Jessica is one of the reasons I was able to be diagnosed with EDS and I just posted a video telling that exact story and how she helped me with this diagnosis. Happy EDS & hEDS Awareness Month to anyone affect, and if you're able-bodied, a reminder that the EDS Society is fundraising for EDS research as it is still an incurable illness, so spread the word and donate if you can!
Great conversation, as always! Just a heads up, the audio is a little high and warbled like it was sped up a bit. I wasn’t sure if it was my speaker or my brain playing tricks until the ad section sounded completely normal.
Ik this video is about y'all, but I do want to say that I appreciate that you still speak out loud in your videos. Not that you should HAVE to, but I'm currently losing my vision at a rapid rate, and it's made me want to learn more about other disabilities that have to do with senses. (I was already disabled due to chronic pain and mentally) however, I quickly realized that many deaf people do not talk in their videos (obviously) and instead put subtitles, which are now inaccessible to me. Your videos have helped me able to still learn about deafness without any assistance, and I greatly appreciate that. Again, I would support any choice you or any deaf person made, but it's really nice to have an accessible resource that comes from a deaf person directly. Thanks!
Ooh I have a hack for being lonely while stuck in bed and not being able to come down or it being an absolute struggle to come down. Ask your loved ones to come up. I know this sound obvious but I realise we often don't out of guild, not wanting to bother them, or because it hurts, or they can't stay too long. But usually your loved ones are happy to see you and to do that for you and it is little effort for them. And even if it is for just a few minutes, it is worth it. Just clearly communicate it.
As someone with a physical disability, I like how Jessica points out the befits of using the word disabled. I personally prefer it over like "handicapable" or something because saying it reminds people of my limitations that are just part of how I live life. The way I do certain things just looks different by nature of my disability. It's an ability that most people do have that I don't and reminding people I need patience or accommodation for something. So I agree for sure, I don't see it as a dirty word or something to dance around. I appreciate it more when people accept my situation and are kind. Using another word can even feel invalidating of my circumstance, promote misunderstandings, or come off demeaning. As for Claudia mentioning if we wish we could live without it as something to not assume, I think it very much depends on the person and the disability they have. I agree that you shouldn't just assume it. But I know for me, I wouldn't change the past (as in go back and if I could wave a magic wand and just not have this disability) because my disability has impacted my life so much and therefore the person I am. So I feel I'd be a different person if I'd never had it. No, it's not all of who I am, but it is a significant part of my life that made a big impact on how I lived life and the struggles I faced and also the things I gained. So I wouldn't say I wish I never had it even if, yes, it has robbed me of a lot of things I did want to do in life that I simply was unable to. But alter my future? It's a yes. I'd very much like to not have my specific disability if I could like wave a magic wand or whatever and not have this. I don't think everyone should have that perspective because everyone's got their own experience. It absolutely depends on things like the individual and the disability they even have and their situation of how they got it. So I wouldn't assume one way or another if someone would get rid of their disability if given the chance. I'm not sure how others with a disability like mine would feel about that topic, but I also can say I wouldn't mind someone asking me as long as they come at it from a place of empathy and sincerity. Like it gives me a chance to talk about how it's given me new perspectives and how I've positively been impacted from it and also talk about the things I missed out on the things I grieve and hopefully that makes someone better understand a situation they otherwise wouldn't have known about.
If it helps at all, even children of non-disabled will want a particular parent at particular times. Its a good sign that he's securely attached to you if he's willing to push you away because he knows you'll always be around when he wants you
When you were talking about how Rupert deals with Jessica's illness it's sounds similar to how a lot of kids handle things like having a working parent. They understand it's needed, but they also get frustrated as they learn you can't do everything at once. Sometimes all they want is that parent, and other times they are trying to convey to that parent how they felt. Also, as someone who is autistic (I do also consider it a disability, especially with how much it affects me) it's nice to see a disabled parent talking about their experience. I had always thought I could never be a parent. I assumed I would have to just completely ignore my own needs, and just be in constant burn out. Seeing this (and realizing that kids seem to see disability similar to a job) makes me realize that maybe someday I can do it. Just like many parents have to work, some parents have bodies and minds that take work to maintain. Please let me know if any of this comes off as rude, as I don't mean for it to be. /gen
Fellow EDSer, twin mum & huge JessiClaudia fan here. Manifesting is my new favourite go-to for “pain curtain” days. You know, it’s when the heavy red velvet pain curtain drops down and you can’t see or do anything else? Thank you for this HUGE gift. My gratitude to you both is indescribable! 🥰💕✨
I loved when Jessica said she’d include ADHD and Autism as disabilities! I have both of those (and a few other mental health conditions) and I would 100% consider myself disabled
I am chronically ill and disabled (and your channel has greatly helped me come to terms with that, so thank you!). Claudia talking about trying to be as productive as possible while bedridden is not surprising because of 1. Who she is and also 2. How society programs us. But it's also really hard to hear as someone who cannot be productive on my worst days. You've probably talked about this before, not having to be productive, but it's a hard thing to come to terms with when you're chronically ill. This past winter was the worst I've ever been healthwise. For six months I've been essentially bedridden and also had to rest my mind. Tv shows and UA-cam that weren't too taxing on mental processes or too emotionally stressful was really all I could do for a long time. I am thankfully on the mend with the help of my team including a physiotherapist and kinesiologist. But for a while there it felt very grim, not sure how long I'd be completely unproductive. As I always say. Don't get ill, it's very boring 😂
My “being productive” on those types of days or when I am feeling like that is often to do lessons on Duolingo as it is kinda distracting fun but also reminds me that it was pass and I will have other times when I can do things… like travel again.
It is interesting to hear someone with physical disabilities say that they consider ADHD and Autism to be disabilities, so thank you for sharing that. I am recently diagnosed and can't really decide whether I feel a connection to the term and the wider disability community yet - it almost feels like imposter syndrome.
Lovely video ❤ I'd also be very interested in a sort of house tour with attention to specific accessibility things. I'm thinking of the extra rail-thingy on the wall of the staircase that helps you keep your balance. I've studied architecture, and often accessibility was just reduced to wheelchair access, but I like to learn about different tricks as well. I know there was a lot of information in the renovation videos, very interesting! But maybe there are new things, or things that have changed with Rupert there?
As an autistic, it's a part of me that I wouldn't change (for the most part) ... and it is absolutely a disability. And before I accepted that, I would routinely push myself *far* past my capacity trying to do what everyone around me was doing, collapse, and then beat myself up for being "lazy." I spent most of my teens and 20s doing that. It was not sustainable, it made me miserable, and none of the things I did because I was forcing myself past my limits were remotely worth what I was doing to myself in order to get them.
Such a lovely video, and really quite liked the intimate set-up in the car! Thank you for continuing to bring much needed awareness to what everyday life is like with a disability, and the intricate ways it can affect work and home life, especially showing how different each day can be based on the episodic nature of your condition. I always find this the part others find so hard to grasp about disability, but I’m sure this video is already giving many people a better insight into what having a disability can be like and helping to foster much more empathy towards disabled people. You have made myself and so many others feel so seen in your transparency, from talking about how you still do things even with a background level of pain, to overworking yourself on good days as you never know how long it’s going to last until you may be bed-bound again. I’m so glad you are able to keep looking forward and doing things you love despite the adversity you face and it makes me so happy to see the support and understanding Claudia shows you, like how she advocates for your health even when you think you just need to push through! Sending you all the best wishes and much love to you and your family xx
Thank you so much for sharing this! I love how understanding Claudia is and how Jessica is so transparent with her. I believe that transparency in a relationship and specifically in a inter-abled relationship, is key to finding the right paths to meeting each other’s needs ❤ also, I love how Rupert is learning how to process and understand disability in his family ❤ Honestly, congratulations Jess and Claud, you girls are AMAZING 😻 Adding to this: love that you included autism and ADHD as disabilities. As an autistic, disabled and chronically ill woman, I really appreciate this type of content.
It's about having a hook to hang your hat on. You know why you are the way you are. You can use your strengths to compensate for your weaknesses to enable you to get what you want from your life. I have an adult son with ASD as well as other physical & mental health conditions that are not considered disabilities but over time can become disabling - like diabetes and anxiety. I'm in the same position - diabetes, kidney failure, AMD & c-PTSD - although all are currently controlled by medication over the longer term I can expect the meds for the diabetes, kidney issues & AMD to become less effective & i'm not medicated for the cPTSD. Today wasn't good - my cptsd got triggered twice, but I got thru it. For ALL of us it's about knowing what your limitations are and working within those boundaries set by your limitations.
Regarding Autism and ADHD, I definitely count them as disabilities. The impact on the daily life may not be visible or physical (it can be though) but it really affects my way to plan my day/week, what events I can attend or not and such things. It took me time to accept the idea autism is a disability though, because I had a whole mountain of internalised ableism to overcome, but now I find it extremely freeing and find I allow me to be more gentle toward myself.
I don’t know why, but I just imagined how cool it would be if in like 18 years Rupert talks about his perspective of growing up with you as his parents
Regarding photography, Karl Taylor offers the most in-depth tutorials. He’s a commercial photographer, so the lessons are more focused on technicalities rather than the art aspect of the craft, but he covers pretty much every popular genre (portrait, product etc)
I hear you about the neck/head spasm. Lumbar pain that makes is difficult to stand long enough to take a shower. Just yesterday got injections that are supposed to llast until a medial nerve block the first week of June. We'll see. It will take about that long for the injections I got yesterday to kick in. Need to lie down now.
I hope my children are as good as Rupert. I know hes not 100% perfect but hes great! My god son is getting there! Im so glad Jessica got so lucky with her family. Suffering so long means you totally deserve a good life! Even if its covered in pain and some bad days. I've been crashing bad lately and I know its not controllable constantly but I feel so guilty for not being more active with my god son. I care for him while his parents work. Having to push through I use the spoon theory. But most days I'm running on forks with soup... and sometimes even butter knives and no energy to lift the bowl to my lips.
I’m chronically ill and have healthy twin sister. Her daughter has always been so understanding of Aunty even when she was a baby and toddler. She just turned 7 last week. I can only work casually and it’s hard when I have to say no. I had to say no for the last 2 weeks which sucks
I am pregnant, and I have cerebral palsy and small fiber neuropathy. I have been having a really hard time sleeping at night because of pain in my knees, feeling cold and hard. I had a spasm in one leg and paralysis in the other thigh. And was scared that it scared the baby. I have had some stiffness in my neck that is hard to pop previously having nerve pain and torticollis in the area makes me worried.
It's so nice to hear that Claudia understands your condition and is helping if you push yourself too much. I'm disabled too, have both mental and physical conditions and while my husband understands physical ones, mental ones are still foreign to him. But to be honest, I don't understand everything about Borderline Personality Disorder (that I have) and while I have this diagnosis for almost a year it's still new to me. Not that anything changed in my behaviour the day that I got diagnosis, because I am like that for years. But what is the most annoying is when the doctors say 'you are too young for being that sick', like I'm sorry, I shouldn't be born without one rib and with double scoliosis that made almost half of my conditions. And don't even get me started on getting painkillers with BPD and Bipolar Disorder, everyone is too scared to prescribe anything because they think that I'll overdose. I might be ill, but I'm not stupid.
As it's EDS Awareness Month and Jessica is describing similar pain to my own, I hope it's OK to share that medical cannabis is transforming my life. I'm part of the Sapphire medical trial in the UK, which is making cannabis available for people with EDS and other chronic conditions. I have to pay for the cannabis, but I consider it lifesaving, so dramatic has the improvement been across all my EDS issues.
Things I wish that people didn't assume about disability: That my walking stick means I have tons of energy and can wait, or worse - that it means it's okay to quickly overtake me then slow down in front of me, wasting energy that I don't have.
I haven't even watched it all yet, but as someone who suffers from EDS/HSD also, this feels like some of the best advice ever! Thanks Jessica 💕💕✨✨ *just to add* I don't think Rupert is upset that you're not Claudia, I think he's upset that his timetable has suddenly changed without any real notice lool babies/kids sometimes love routine, especially when they feel it works in their favour. I was v.similar when I was little and my Mum wouldn't often get jealous 🥲
"I personally would include ADHD and autism as disabilities". As someone who has 4 neurodivergences (ADHD, autism, aphantasia, and SDAM), 4 mental illnesses (C-PTSD, dermatillomania, depression, and generalized anxiety), and 2 eating disorders (ARFIF and binge eating), I personally couldn't agree more. Now that my C-PTSD has been under control for quite some time, out of all these 10 conditions, having ADHD and autism is definitely what is having the biggest impact in terms of making my everyday life more challenging. They are chronic conditions so, unlike the mental illnesses and the eating disorders that will progressively get better and eventually fade away, I'm stuck with these. Accommodations (like wearing earplugs) can only get me so far; they can help me manage my symptoms a bit better or make them less intense, but the symptoms never completely go away (and ADHD meds aggravate my autism symptoms, so those are not even an option). Being auDHD can be quite exhausting, not only because I sometimes feel like my brain is literally pulling me in two opposite directions at the same time (eg: novelty-seeking from ADHD vs routine-craving from autism) but also because, in order to be able to keep a job, I became a high-masker since I was a very young child and having masking alone consumes most of the spoons I have for the day. It has reached a point when, even when I'm trying to unmask, I can't do it anymore. As someone who went through over 3 decades of life being undiagnosed and feeling "broken" for being different and not knowing why, my mask is now so ingrained in me that I can never completely take it off; not even when I'm around my friends, family or even when I'm completely by myself. Out of all the 10 conditions I have, ADHD and autism are the ones I currently consider to be a disability for me, as they impact every single area of my life in a way that none of the others does.
I have always thought that poor eyesight should be given more recognition as a disability. Many people struggle to buy good quality glasses every year and should be given a decent allowance towards this. Eyes are an important part of our bodies and we are all entitled to see as well as we can
It would be nice to have more disabling conditions be RECOGNIZED for being a disability. And that everyone exists on a spectrum. I have asthma, and because it is so common it is often handwaved or brushed off. “Just use a puff of inhaler and press on!” Its not that simple all the time or with every person! I imagine many folks who have chronic conditions feel similarly now and again.
Thank you for sharing. It must be so hard when your toddler finds it difficult to process your absence when you're bedridden and shows it as rejection. Sending love. I'm sure that, with time, he will understand. If you're interested in suggestions, read on. Otherwise, please ignore. Maybe introducing little rituals/ moments of connection that are set through the day (maybe after waking up and before bed) that you can do together even when bedridden might help? That is, if you can find something that works for you and is not adding stress. It can be simple things like listening to a favourite song while holding hands, or closing eyes together and he lets you know when he hears a bird
I have hEDS, and a 3 yo daughter. One of her first sentences was "Mommy no chase. Mommy has a hurt." It makes me so sad that I can't play with her more physically, but it does lead to some really creative and sweet moments: "you want to put makeup Mommy while she's on the couch? Go for it."
So sweet!
Can you imagine how fun it would be if Jessica would do a “Rupert does my makeup” video when he is 3?
She sounds so adorable and understanding! Apparently I was similar as a young child, I learned to read when I was 3 and a half because mama was tired after work and I decided that I won't bother her with reading to me 😂
It's so interesting to hear Claudia be so understanding and empathetic. I'm chronically ill and I feel like most people I know don't really understand it so it's lovely to see such conversations:')
Im sure you will find the right people that understand your pain and struggles and support you no matter what ❤
You'll find your people in time ❤
My current boyfriend understands without me having to explain in detail. And he loves me for me, all of me. He doesn't love me and reluctantly put up with my illness which is how it felt with my ex. He doesn't mind the accommodations I need because to him they're just a part of being with me, he has never known me any other way, whereas I know how I used to be and I miss it. I think it helps that he has adhd and autism so he gets overwhelmed and needs his own different accommodations which don't bother me at all. I'm physically disabled and he has a busy noisy brain so I do the mental work of organising us, reading maps, planning meals, and he does the physical work of carrying my bag for me or pushing my wheelchair or putting the dishes away. It balances out and neither one of us feels like a burden.
That’s what love looks like ♥️ I don’t think it’s worth settling for anything else.
My husband and I are both AuDHD, but I suffer from more chronic physical ailments than he does. He takes very good care of me 🥹
Me, too. And also now elderly, to boot.
When we are chronically ill we need amazing people who support us. We will lose many people, but stick with those who truly understand. I have three people in my life who support and understand me, and that already makes a world of difference
I'm a full time wheelchair user with a biped wife, and hearing you two talk about your parenting is incredibly helpful. There are so many times I think, "How could someone like ME be a good mom?!" and then I see Jessica and wouldn't dream of thinking that about her. Thank you both for showing me how to be kinder to myself, and to have hope for my disabled parenting future. 💞
OMG! I loved that you said “biped wife” ❤
Me too
Im in a wheelchair and I thought a lot
Will I be a good dad
Or should I even have kids
I look at parenting slightly differently. Neither of my parents have disabilities, I was blamed by my dad for my disability (cp from birth) for being lazy and wrecking the family. My mother allowed it, in part because she felt like she had no choice but to stay with him, and also because she was able to reframe things in her mind once my dad mellowed. They love each other very much but he is a bully and a narcissist. Parenting is for me not about shortcomings from disability, class or opportunity (among so many factors) rather its about insights, self awareness and the ability to acknowledge mistakes and communication. All of which we as disabled folks often have more in our kit bag than able bodied people. I am not a parent but I know my life would have been so much easier and less traumatic if I had parents that accepted me. Kids who grow up around us see the beauty in difference more clearly. Good luck to any future parents follow your dreams. Real Love and acceptance is worth so much more to the kids and the world, than having non disabled parents.
What is biped?
@@allyterese8778 walking with 2 legs.
If we fast forward 20 years, we see Rupert as a man grateful that sign language is as natural as spoken language, to whom empathy is as natural as breathing, with wisdom and experience that some go their entire lives without. He is one lucky little boy!
*Regarding Jessica considering ADHD (and autism) disabilities- yeah I used to not think ADHD was a disability until it began severely impacting my physical health 🙃 thank you for saying this!! I'm sure you'll change somebody's life
As someone with ADHD, autistic traits, and several chronic illnesses, I can tell you that I personally feel that ADHD / autism / neurodivergence is both part of normal human diversity and also can be disabling. And since disability is not a dirty word, It's okay to admit that these things are both disabling and potentially empowering. You can learn about yourself and the traits you have, and connect with other people with similar experiences who were born with that specific variety of being human.
I suspect that for some people, when they say being neurodivergent isn't a disability, a major factor is trying to counter societal ableism and pushing back against the narrative that neurotypicals are normal and good and neurodivergents are abnormal and bad. But it's okay to be proud of who you are and your equal worth as a human being, and also be empowered by the concept of disability, accept the fact that it's not the dirty word that abled society says it is, and the fact that you have disability-related struggles and needs, and there are ways to help address them.
something that breaks me is that in my country only recently ADHD was brought to attention, and is so rare to someone considers it a learning disability that I oftentimes feel invalidated when I'm struggling, because here, more often the not, the reaction I (and others ADHDers) get is "oh c'mon everyone struggles with that, stop being dramatic. not everything is a disorder"
YES! I loved that part, I felt so seen... Thank you Jessica ❤
@Lórien Braga In the US, ADHD is classified as a developmental disability because it affects more than just the way we learn; it affects every part of our lives!
I have ADHD and Autism and personally feel they are disabilities to me, but I wasn't raised with that thinking so I didn't actually start to call myself disabled until I had physical health stuff going on as well. And of course now I recognize how much they're connected (it's also why I call them neurological disabilities, just brain stuff, not exclusively thinking-related but all sorts of things. like how we experience sensory input and all sorts of stuff)
I remember an older video where you were talking about how kids are very understanding of their parent's disability, but my toddler was in the middle of the phase where she'd be super frustrated by it so I was like... I wish 😂. Now she's 4 and she's way better at understanding! She will often even suggest alternative activities, like if I say I can't get up right now she'll be like "ok I'll sit with you and we can read a book" or whatever. So I'm sure Rupert will get there!
I have a mobility disability and chronic pain and I totally understand the urge to rush rush rush to get things done on a good day for fear that the next day will be a bad one...only to guarantee yourself a bad day because you did too much! I'm much better at pacing than I used to be, and much better at going "today I brushed my hair and that's enough."
Yes! Pacing is such a bastard to try to figure out...
@@Rose-jz6sx it really is!
I do almost all of my schooling online so if i get behind (which i often due bc my disabilities do not care about due dates) i almost guarantee myself a migraine day because of looking at screens
100% yes to autism being a disability. It helped me so much to accept that some things are just harder for me (after my diagnosis at 26). It makes me put much less pressure on myself to perform at an intensity I just can't most of the time and my mental health has gotten way better since
I'm a cis guy with hypermobile EDS (*very* much in the minority here), as well as having heavy dysautonomia. It has very much made my life a lot harder and different than I expected. I did manage to finally graduate from uni, but now I'm back at home trying to figure out my next path forward.
Keep up the amazing work.
Congratulations for the big achievement! 🎉
All the best, Bud! Remember to be kind to yourself. You've got this and you slay!
Congrats on graduating!
I don't have EDS but suffer from other disorders, and I want to write about a guy with EDS. It seems to be a lot rarer in males, do you know why? Is the health care biased against you with this disorder because you're a guy?
Also, from one person struggling to another - don't push yourself just for the sake of pushing. I graduated high school and uni after many years, fought really hard, but to what use? I'm unable to ever work. I could've used that energy to do better things, like find close friends, get the correct diagnoses and treatments, make my dream journey to London, or just try to be happy in the moment. I don't know you, maybe you are able to work, but I regret pushing through all of that for no reason just to try to be "normal". It's useless for me today at age 35.
Congratulations on graduating university! I just did too- doing it while disabled is rough lol
I work with children and it kinda feels to me that in these moments, when he "pushes Jessica away" he wants to "test" if you still care enough to try and make up with him
That's really insightful!
Love this perspective!
My partner jokingly asked a few days ago what would happen if they would put my conscious in a fully healthy body? I like almost panicked at the thought, because I am so used to dealing with multiple chronic illnesses and disabilities from birth, and I don't even think about most of my coping mechanisms, they are so ingrained into my system. I wouldn't know what to do or how to deal with a fully healthy body and mind. I would get used to it pretty quickly I would think since being disabled kinda forces you to become very and adaptable, but realizing that the first thing I would do would be panicking made me laugh.
Omg I'd be so productive! For like, a week. And then I'd probably start acting like myself again hahaha
I have MS and my main issue is fatigue. Maybe once or twice a year for a day or two, I have a peak of energy where my fatigue is not gone, but it improves significantly. And oh my God, I can do so many things, being so productive. It's like having superpowers. I always wonder if all my days where like that, all the things I would be able to do. I also wonder why "normal people" don't do more things. And I guess that's because they lack of experience that someone that's chronically ill or disable has in ,you know, dragging themselves day after day and pushing through again and again. It's like someone who is used to train with a lot of weight vs someone who has never had to lift more than a few pounds.
I have, to some degree, had this experience. One by one my issues have been appropriately medicated and routines changed, so issues that were debilitating are mild now. It's an intensely weird experience and it's taken a lot to adjust. This is one side of chronic illness they really don't talk about!
Sounds about right for that age. He'll smooth out soon again. Especially when his brain develops enough to really grasp the idea of a pain day (snide society marks aside), usually between 5 and 8 is a real boost in this, regarding brain development.
And he's already got some foundation in this. He just needs to connect that ouchy isnt his fault, and that mumma wouldn't punish him at random. And it sounds like he's already halfway there 🥰
(its weird to say that other people in pain can feel like a punishment to people not in pain, but... Sometimes as you know, people get stuck there and keep processing it like that)
@@ninjakitteh9095 No I get what you mean -
It's not a punishment in the sense of getting yelled at or grounded, but it can feel like someone is avoiding you, ignoring you etc. when something isn't their fault and that can feel like a punishment.
It takes some work to get out of the mindset and realize "Oh shit I do the same thing when I'm in pain / sick and I'm not trying to punish anyone so why would they be trying to punish me?"
Idk if I explained this that well but I get where you're coming from
Thanks for sharing this. I'm disabled and chronically ill and would have loved to have videos like this available when I had a young child (my boys are 18 and 19 now). What I will say is that regarding a child having grown up with a disabled parent, I've found that it's made our children have even greater empathy and understanding for others, especially those with any kind of illness. My oldest was my carer for many years when I was a single mum and he talks fondly about those years, which helped the guilt I used to feel about it. He tells me he's glad he's had that experience although he obviously appreciated my now husband and stepson also being around to help later. I know he's the amazing man he is in part because of being raised by a parent who is disabled. I have no doubt the same will apply for Rupert, especially with the loving example he has in Claudia. Keep up the great work with this channel and spreading awareness ❤
Amen;
Watching this whilst up, unable to sleep from pain at 5am, 10 days past my second surgery of the year for pain (5-7 a year for the past five years), fucking thank you for acknowledging the being productive with a dark cloud.
I have a now 14 year old, I've been a chronically ill single mother their whole life and I really struggle with the guilt sometimes.. like when they have to force me to bed because I'm trying to push through too much... it gets easier once they start talking, and the goblin has great empathy and understanding of differences, in part because they were raised by someone disabled. Y'all are beautiful, you got this.
I've got a rare strain of a degenerative disease, CMT (Charcot Marie Tooth), Endo, PCOS, and then several really damaging sexual attacks, combined with medical negligence, means I'll be having the 5-7 surgeries a year for the foreseeable future. Mainly botox to paralyze the constant contractions, which helps hugely, and ketamine infusions, plus stitching and repairs to some irreversible damage that due to my physiology means that I don't heal correctly and reject any foreign body like mesh or even stitches, so they need to get replaced every 8-10 weeks so they don't abscess and turn into worse scar tissue. .
What I find so hard is the compassion fatigue. I hate to talk about it because I know its boring to people, but it takes up so much of my life, and also my many... spicy ND brain means I'm terrible at lying when someone asks how I am.. because I always want a real response, I still struggle to understand in the moment most people want an "I'm fine" response. So that you have each other to talk to, and such a beautiful and understanding relationship, it makes me so happy to see. Thank you for sharing so honestly.
Just got my new orthotic shoes in the mail, new Jessie and Claud video, and got food. What a great evening.
As the parent of a kid with a hand difference, I’m so glad there are kids like Rupert in the world. Mine is 13 and generally good with his difference (symbrachydactyly-which my autocorrect recognizes!), but there were a couple rough spots-always with either kids who reacted poorly, or got grabby, or adults who tried too hard to “help” by doing things for him instead of helping him figure out how to do things his own way.
Claudia and Jessica are relationship goals no matter whether you are straight, gay, lesbian, or whatever else people want as their relationships. Both of you keep being awesome! Lots of love from Australia!
I find what you say about autism and ADHD so important - as a chronically ill autistic person, I so often feel alienated within the neurodivergent community because people are like "they're not disabilities, that would be STIGMATISING!" And quite apart from the fact aspects of my autism are disabling, I'm like, "What, and your haste to distance yourself from disability, and from being in community with fellow disabled people, isn't the very essence of disability stigma?"
its really funny to me that i entered my current relationship at 15 as the "Able Bodied One", as my partner has POTs & UC & other health issues. But now we're in our early 20's and I have an Ehler Danlos-like hypermobility connective tissue condition, long covid, I now know i'm autistic, and mystery heart conditions,, so fun :')
But for real, if you're disabled and your partner isn't and they aren't being as supportive and loving as Claudia,,,, tell them to step up their game. I was unknowingly disabled & 15 years old!! and was so conscious of how far my partner could walk, if they needed to sit, what foods they couldn't eat, etc. It's literally so easy not to be garbage and you deserve someone who treats you like a person, no matter how sick/disabled you are
.
I like Claudia's analogy about diagnosis and shoe size! I've seen doctors refuse to diagnose EDS especially if you already have another diagnosis like fibromyalgia/CFS because "you can't do anything about it anyway" which even if it were true (which it isn't for everyone!) the validation and ability to understand oneself better in itself is hugely beneficial.
I'm sitting here like "I'm not DISABLED ENOUGH" and Jessica is sitting there like "if the shoe fits"
My girlfriend has chronic pain and joint issues and seeing content like this is really encouraging because it's reassuring to see that you've built a life together with Jessica's disabilities. It makes it seem less impossible and less scary that my girlfriend and I will be able to build our life together and be happy and do things that we love, even when we have to deal with the bad stuff like the days when she wakes up and is in pain. We don't live together yet and we're both in uni so we've got a long way to go but we can make it.
You are both so honest about your feelings. This felt like we were sitting in on your therapy session.
I love the conversation about how thinking about something as a disability can help manage it. I’ve always been told I’m the most neurotypical of my family (not a high bar) but noticing autism signs in myself and actively using my autistic sister’s mental health strategies has helped me a huge amount. On some level, it doesn’t entirely matter if I “have autism” or not, using that word helps me feel better about myself and take active steps to help myself operate.
Filming in the car because you have to use toddler's nap time efficiently is peak parenting relatability and we love to see it!
'You are necessary. You are needed.' How this statement contradicts disability prejudice!
I feel like May is "my mind and body don't know how to act right" month with mental health, EDS, CFS, and fibromyalgia being the ones I'm aware of.
The conversation between 11:35 and 12:16 is so huge. I'm a university student right now and I always feel like I have to push myself to do as much as possible while I'm well (laundry, meal prep, deep cleaning, working ahead on school, going out with friends) for when I inevitably have a flare-up of some kind. It makes me feel so stressed even on "good" days because I feel like I have some kind of quota to meet.
And this definitely applies to mental health conditions too. On days I feel good and one of my mental illnesses isn't acting up, I feel so much pressure to do everything and enjoy everything. Because soon I won't be able to enjoy anything. It's such a horrible way to live. I get scared of my own damn mind taking away my ability to be happy or productive. It is and feels like a physical thing coming to stop me. But it's not a way to live to force yourself to do EVERYTHING just because you're having an ok day or week. The pressure is torture.
I have EDS and just had a child. It's so difficult just to take care of myself and him. I'm dreading when I have terrible days and cant function. It's so nice to hear how you handle things, and I hope you have more good days than bad. ❤
I'm a mom of 5 with multiple conditions that occasionally cause me to be on bed rest. The toddler rejecting you when you come off bed rest is so familiar to me! I think all five of mine did that at Rupert's age😂
Lovely video! It's wonderful how comfortable you and Claudia are sharing this part of your lives. I'm so glad you included autism/adhd as disabilities, because every time I try to say my autism is a disability around my family, they get upset, using "differently-abled" or saying not to limit myself with labels. Although I agree that labels don't define people fully, they are still helpful when I struggle. Do you think you could do a video giving advice to those of us who live with our parents/guardians who aren't supportive of our disabilities/chronic illness? I'm also physically disabled and have no idea why, and have been judged for using a mobility aid :( It's hopeful to see that there might be people out there who'd love and support us just as we are. Well wishes from an American viewer!
I so appreciate hearing your perspective on this.
I am disabled (juvenile rheumatoid arthritis), and have an abled fiance. He is so incredibly understanding, so different from my past relationships, and I hear a lot of what he says to me in how Claudia talks about your disability. Thank you for sharing.
I've also talked to my partner about switching bodies sometimes! He says he would love to relieve me of the pain for a while and I have to remind him that I'm actually much better equipped to manage it because it's my everyday existence. People with chronic pain really are so resilient and sometimes it's important to take a step back and remember what we push through every day.
Much love.
7:15 one of the hardest things about being physically disabled for me is not being able to explain to my preschool age nephew why i can’t always play with him. sometimes he’ll pretend to be a doctor and give me “medicine” and it’s so hard to explain that it’s not that simple. he’s one of my biggest motivators for sure, and i hope when he’s older he’ll understand how important he is to me :)
This video came on a really good day for me because I had an argument with my mother who said I wasnt disabled because I am not missing a limb and me just there having spent a lot of time coming to terms with being disabled even though I dont look 'disabled' and it's really validating to hear this
If a government application famous for denying disabled peoples first application and requiring appeals, approved me on the first time, then I should not be questioning it 😂😂
I had a thalamic stroke, which damaged my nerves, "everyone's nerve relay system." My pain on a good day is a 100, which I've learned is my new "normal. "I feel it, its always present, almost 2 years. A bad pain day is where I can't function and stare into space trying to find a safe place, I'm being tortured, burned alive, electrocuted, and frozen. People don't understand and don't believe me. My heart, hubby Brian, has been a wonderful husband and caregiver. He does everything from cooking and taking care of my basic needs. If I didn't have him I don't know what I would do. You guys remind me of us. Is it easy having a marriage being on either side, disability or caregiver, not at all. But when you love someone and have that communication, you do make it work. ❤
ADHD was my unknown disability. Diagnosed at 44. I now use it as a super power and don't get upset when it gives me limits.
Thanks for talking about this, having eds, autism, and adhd is a wild ride, and it’s only been known to me that that’s what I was dealing with for a couple years now. I’ve been watching your content for much longer than I’ve had a diagnosis of any kind and it’s been instrumental to my understanding of myself and conceptualizing a future where I can be who I am and also be who I want to be. 💛
I love how sweet Jessica and Claudia’s relationship is! It’s so obvious that they really get each other!
I just wanted to say that I am grateful that I have followed you for so long, because that helps me help my gf accept and live with her own disability.
She's an artist that cannot use her hands anymore and sometimes, it's hard.
We met 2 years ago at the beginning of her still ongoing journey to the right diagnosis and treatment, and I feel like I couldn't have been better prepared than with you as a teacher.
Thank you
Jessica, I have an acquired brain injury (and am a single mum), and many times I can't handle a lot of sounds in the evening (among other things). My daughter is now 3 and a half, and I'd say at about 3, they get a bit more understanding, are able to reason a bit more, comprehend deeper. My daughter has a lot of empathy, and she is never annoyed at me now for my limitations. So even if it's hard for Rupert to understand sometimes now, eventually he'll completely understand and will likely have compassion and empathy (more so than many adults). My daughter knows that I wish I could do all the things with her that she wants to do, but she accepts that I have an injured brain that's trying its best. Love and hugs to you guys xx
11:39 This describes my mental conditions very well!
I have bipolar disorder and ADHD (+more) so my mood and energy levels vary insanely much. One day I'm super tired and have self-destructive thoughts and there's no point with anything, and other days I'm constantly on the go and doing 10 times more stuff and social and happy. But I always live with that dark rainy cloud over my back, I know it will end any time. And often, the more I push myself during my happy, energetic days, the longer and deeper low I suffer afterwards.
I'm on medications so I don't have full-blown episodes as often any more, but my life is constantly going in cycles. I plan social things when I'm up and happy, and then I shift and become tired and cannot follow through with my plans. Incredibly inconsistent life, for decades.
You love those days with energy and try to squeeze out every little drop from it, maybe you won't experience it for another month? But then you pay for it a few days later, and you hate your life and see no point in anything.
No wonder I'm unable to work or study! It's a full time job for me to just live alone with my cat. Just because I stay out of hospital wards nowadays doesn't mean I'm a functioning human being, lol...
Having your child reject you like that must be so hard, if I experience that with my future child I would find it heartbreaking (I do have ADHD though, which comes with extreme rejection sensitivity) but apparently it is a very normal thing for toddlers to do
Yesterday I finished a project I was very invested in and absolutely wanted to accomplish so I "pushed through", but by the time it was done and I started winding down I got hit with such a massive migraine, nausea and vertigo mix that was basically my body going "why would you do this to me." It was a little discouraging cause I couldnt savour the accomplishment of having gotten something done since I was too busy dealing with the aftermath. Luckily it only lasted the evening and I didnt end up in extended bedrest, but all of my fears of doing literally anything are founded in that dynamic of pushing through, paying the price and then being afraid of starting it all over again. It's paralyzing.
I found you because I also have EDS. It's crazy how hard functioning with it can be and how it can randomly take you down.
SO CLOSE TO 1 MILLION SUBSCRIBERRSSS!!!!
8:20 so you were mentioning that your nearly 2yo sometimes kind of rejects Jessica. That is pretty developmentally normal. Kids often go through time periods of deeply preferring one parent over the other. It can be really upsetting and stressing for both parents. It will pass. I suspect it has less to do with who is available when and more to do with age and stage stuff.
He's a tot already where does the time go.
Thank you so much for including ADHD and autism as disabilities. There are people who look at these diagnoses as something else, another category.
You two are my favourite couple on UA-cam. You're both so real, down to earth and very sure of yourselves and articulated. Just generally very lovely human beings ❤
"It's pretty bad pain, but it's liveable pain"...I felt that so deeply.
Love your videos. Not sure what to say but I wanted to leave a longish comment for the engagement. Keep up the good work! It is amazing to see people like you out there living happy lives. Little Ru is adorable.
Jessica is looking lovely and Claudia looks amazing in that colour, but what shines the brightest is the love and compassion that they show ❤. And it is thanks to Stevie that I discovered that I have hEDS. I got my diagnosis in August of 2019, 1,5 weeks after seeing her video about it (my GP is AMAZING!).
I'm autistic and I do consider myself disabled, because there are times when I can't do certain things, or it takes me longer to recover from events than it does for non-autistic people.
As someone with autism and ADHD, the disability validation is very appreciated
These videos bring me so much joy. I am a freelance creator myself (print and written media), and it can be both a blessing and a disadvantage to have a chronic illness that requires balancing self-care with sticking to my goals. I really appreciate both of you
As an autistic person with ADHD I'm glad I can be part of the club.
Jessica is one of the reasons I was able to be diagnosed with EDS and I just posted a video telling that exact story and how she helped me with this diagnosis. Happy EDS & hEDS Awareness Month to anyone affect, and if you're able-bodied, a reminder that the EDS Society is fundraising for EDS research as it is still an incurable illness, so spread the word and donate if you can!
I love Jessica and Claudia’s relationship to each other. ❤️ I also like how Claudia explained to Rupert using Walter as an example. 😊
Great conversation, as always! Just a heads up, the audio is a little high and warbled like it was sped up a bit. I wasn’t sure if it was my speaker or my brain playing tricks until the ad section sounded completely normal.
Ik this video is about y'all, but I do want to say that I appreciate that you still speak out loud in your videos. Not that you should HAVE to, but I'm currently losing my vision at a rapid rate, and it's made me want to learn more about other disabilities that have to do with senses. (I was already disabled due to chronic pain and mentally) however, I quickly realized that many deaf people do not talk in their videos (obviously) and instead put subtitles, which are now inaccessible to me. Your videos have helped me able to still learn about deafness without any assistance, and I greatly appreciate that. Again, I would support any choice you or any deaf person made, but it's really nice to have an accessible resource that comes from a deaf person directly. Thanks!
"Ask Your Lesbian Moms" is one of my favourite things about this channel.
Ooh I have a hack for being lonely while stuck in bed and not being able to come down or it being an absolute struggle to come down. Ask your loved ones to come up. I know this sound obvious but I realise we often don't out of guild, not wanting to bother them, or because it hurts, or they can't stay too long. But usually your loved ones are happy to see you and to do that for you and it is little effort for them. And even if it is for just a few minutes, it is worth it. Just clearly communicate it.
As someone with a physical disability, I like how Jessica points out the befits of using the word disabled. I personally prefer it over like "handicapable" or something because saying it reminds people of my limitations that are just part of how I live life. The way I do certain things just looks different by nature of my disability. It's an ability that most people do have that I don't and reminding people I need patience or accommodation for something. So I agree for sure, I don't see it as a dirty word or something to dance around. I appreciate it more when people accept my situation and are kind. Using another word can even feel invalidating of my circumstance, promote misunderstandings, or come off demeaning.
As for Claudia mentioning if we wish we could live without it as something to not assume, I think it very much depends on the person and the disability they have. I agree that you shouldn't just assume it. But I know for me, I wouldn't change the past (as in go back and if I could wave a magic wand and just not have this disability) because my disability has impacted my life so much and therefore the person I am. So I feel I'd be a different person if I'd never had it. No, it's not all of who I am, but it is a significant part of my life that made a big impact on how I lived life and the struggles I faced and also the things I gained. So I wouldn't say I wish I never had it even if, yes, it has robbed me of a lot of things I did want to do in life that I simply was unable to. But alter my future? It's a yes. I'd very much like to not have my specific disability if I could like wave a magic wand or whatever and not have this. I don't think everyone should have that perspective because everyone's got their own experience. It absolutely depends on things like the individual and the disability they even have and their situation of how they got it. So I wouldn't assume one way or another if someone would get rid of their disability if given the chance.
I'm not sure how others with a disability like mine would feel about that topic, but I also can say I wouldn't mind someone asking me as long as they come at it from a place of empathy and sincerity. Like it gives me a chance to talk about how it's given me new perspectives and how I've positively been impacted from it and also talk about the things I missed out on the things I grieve and hopefully that makes someone better understand a situation they otherwise wouldn't have known about.
If it helps at all, even children of non-disabled will want a particular parent at particular times. Its a good sign that he's securely attached to you if he's willing to push you away because he knows you'll always be around when he wants you
When you were talking about how Rupert deals with Jessica's illness it's sounds similar to how a lot of kids handle things like having a working parent. They understand it's needed, but they also get frustrated as they learn you can't do everything at once. Sometimes all they want is that parent, and other times they are trying to convey to that parent how they felt.
Also, as someone who is autistic (I do also consider it a disability, especially with how much it affects me) it's nice to see a disabled parent talking about their experience. I had always thought I could never be a parent. I assumed I would have to just completely ignore my own needs, and just be in constant burn out. Seeing this (and realizing that kids seem to see disability similar to a job) makes me realize that maybe someday I can do it. Just like many parents have to work, some parents have bodies and minds that take work to maintain.
Please let me know if any of this comes off as rude, as I don't mean for it to be. /gen
Fellow EDSer, twin mum & huge JessiClaudia fan here. Manifesting is my new favourite go-to for “pain curtain” days. You know, it’s when the heavy red velvet pain curtain drops down and you can’t see or do anything else? Thank you for this HUGE gift. My gratitude to you both is indescribable! 🥰💕✨
I loved when Jessica said she’d include ADHD and Autism as disabilities! I have both of those (and a few other mental health conditions) and I would 100% consider myself disabled
As someone with chronic fatigue, this video was so cathartic and validating
I am chronically ill and disabled (and your channel has greatly helped me come to terms with that, so thank you!). Claudia talking about trying to be as productive as possible while bedridden is not surprising because of 1. Who she is and also 2. How society programs us. But it's also really hard to hear as someone who cannot be productive on my worst days. You've probably talked about this before, not having to be productive, but it's a hard thing to come to terms with when you're chronically ill. This past winter was the worst I've ever been healthwise. For six months I've been essentially bedridden and also had to rest my mind. Tv shows and UA-cam that weren't too taxing on mental processes or too emotionally stressful was really all I could do for a long time.
I am thankfully on the mend with the help of my team including a physiotherapist and kinesiologist. But for a while there it felt very grim, not sure how long I'd be completely unproductive.
As I always say. Don't get ill, it's very boring 😂
My “being productive” on those types of days or when I am feeling like that is often to do lessons on Duolingo as it is kinda distracting fun but also reminds me that it was pass and I will have other times when I can do things… like travel again.
It is interesting to hear someone with physical disabilities say that they consider ADHD and Autism to be disabilities, so thank you for sharing that. I am recently diagnosed and can't really decide whether I feel a connection to the term and the wider disability community yet - it almost feels like imposter syndrome.
Lovely video ❤ I'd also be very interested in a sort of house tour with attention to specific accessibility things. I'm thinking of the extra rail-thingy on the wall of the staircase that helps you keep your balance. I've studied architecture, and often accessibility was just reduced to wheelchair access, but I like to learn about different tricks as well.
I know there was a lot of information in the renovation videos, very interesting! But maybe there are new things, or things that have changed with Rupert there?
As an autistic, it's a part of me that I wouldn't change (for the most part) ... and it is absolutely a disability. And before I accepted that, I would routinely push myself *far* past my capacity trying to do what everyone around me was doing, collapse, and then beat myself up for being "lazy." I spent most of my teens and 20s doing that. It was not sustainable, it made me miserable, and none of the things I did because I was forcing myself past my limits were remotely worth what I was doing to myself in order to get them.
Such a lovely video, and really quite liked the intimate set-up in the car! Thank you for continuing to bring much needed awareness to what everyday life is like with a disability, and the intricate ways it can affect work and home life, especially showing how different each day can be based on the episodic nature of your condition. I always find this the part others find so hard to grasp about disability, but I’m sure this video is already giving many people a better insight into what having a disability can be like and helping to foster much more empathy towards disabled people.
You have made myself and so many others feel so seen in your transparency, from talking about how you still do things even with a background level of pain, to overworking yourself on good days as you never know how long it’s going to last until you may be bed-bound again.
I’m so glad you are able to keep looking forward and doing things you love despite the adversity you face and it makes me so happy to see the support and understanding Claudia shows you, like how she advocates for your health even when you think you just need to push through!
Sending you all the best wishes and much love to you and your family xx
Thank you so much for sharing this! I love how understanding Claudia is and how Jessica is so transparent with her. I believe that transparency in a relationship and specifically in a inter-abled relationship, is key to finding the right paths to meeting each other’s needs ❤ also, I love how Rupert is learning how to process and understand disability in his family ❤
Honestly, congratulations Jess and Claud, you girls are AMAZING 😻
Adding to this: love that you included autism and ADHD as disabilities. As an autistic, disabled and chronically ill woman, I really appreciate this type of content.
It's about having a hook to hang your hat on. You know why you are the way you are. You can use your strengths to compensate for your weaknesses to enable you to get what you want from your life.
I have an adult son with ASD as well as other physical & mental health conditions that are not considered disabilities but over time can become disabling - like diabetes and anxiety. I'm in the same position - diabetes, kidney failure, AMD & c-PTSD - although all are currently controlled by medication over the longer term I can expect the meds for the diabetes, kidney issues & AMD to become less effective & i'm not medicated for the cPTSD. Today wasn't good - my cptsd got triggered twice, but I got thru it.
For ALL of us it's about knowing what your limitations are and working within those boundaries set by your limitations.
Regarding Autism and ADHD, I definitely count them as disabilities. The impact on the daily life may not be visible or physical (it can be though) but it really affects my way to plan my day/week, what events I can attend or not and such things. It took me time to accept the idea autism is a disability though, because I had a whole mountain of internalised ableism to overcome, but now I find it extremely freeing and find I allow me to be more gentle toward myself.
I don’t know why, but I just imagined how cool it would be if in like 18 years Rupert talks about his perspective of growing up with you as his parents
Regarding photography, Karl Taylor offers the most in-depth tutorials. He’s a commercial photographer, so the lessons are more focused on technicalities rather than the art aspect of the craft, but he covers pretty much every popular genre (portrait, product etc)
I hear you about the neck/head spasm. Lumbar pain that makes is difficult to stand long enough to take a shower. Just yesterday got injections that are supposed to llast until a medial nerve block the first week of June. We'll see. It will take about that long for the injections I got yesterday to kick in. Need to lie down now.
I dream to have a relationship like this. Currently manifesting a partner who is as accepting and unconditionally loving as these two
I hope my children are as good as Rupert. I know hes not 100% perfect but hes great!
My god son is getting there!
Im so glad Jessica got so lucky with her family. Suffering so long means you totally deserve a good life! Even if its covered in pain and some bad days.
I've been crashing bad lately and I know its not controllable constantly but I feel so guilty for not being more active with my god son. I care for him while his parents work.
Having to push through I use the spoon theory.
But most days I'm running on forks with soup... and sometimes even butter knives and no energy to lift the bowl to my lips.
I’m chronically ill and have healthy twin sister. Her daughter has always been so understanding of Aunty even when she was a baby and toddler. She just turned 7 last week.
I can only work casually and it’s hard when I have to say no. I had to say no for the last 2 weeks which sucks
So glad to have found this channel. Rupert is one lucky little fellow.
You both give me hope for my own future living with a chronic condition. Thanks for what you do ❤️
I am getting tested for EDS later this year. Stuff like this really helps me cope with my chronic pain.
I'm never this early! excited to watch this one
I am pregnant, and I have cerebral palsy and small fiber neuropathy. I have been having a really hard time sleeping at night because of pain in my knees, feeling cold and hard. I had a spasm in one leg and paralysis in the other thigh. And was scared that it scared the baby. I have had some stiffness in my neck that is hard to pop previously having nerve pain and torticollis in the area makes me worried.
In all of the cares and concerns you've discussed, you are solidly absolutely just regular folk. But thanks for sharing your lives with us.
I think in my case it's your British accent that is so interesting.
Ansley Gavin has spoken openly about her EdS on her podcast WHGS. Y’all collaborating would be awesome
It's so nice to hear that Claudia understands your condition and is helping if you push yourself too much. I'm disabled too, have both mental and physical conditions and while my husband understands physical ones, mental ones are still foreign to him. But to be honest, I don't understand everything about Borderline Personality Disorder (that I have) and while I have this diagnosis for almost a year it's still new to me. Not that anything changed in my behaviour the day that I got diagnosis, because I am like that for years. But what is the most annoying is when the doctors say 'you are too young for being that sick', like I'm sorry, I shouldn't be born without one rib and with double scoliosis that made almost half of my conditions. And don't even get me started on getting painkillers with BPD and Bipolar Disorder, everyone is too scared to prescribe anything because they think that I'll overdose. I might be ill, but I'm not stupid.
As it's EDS Awareness Month and Jessica is describing similar pain to my own, I hope it's OK to share that medical cannabis is transforming my life.
I'm part of the Sapphire medical trial in the UK, which is making cannabis available for people with EDS and other chronic conditions. I have to pay for the cannabis, but I consider it lifesaving, so dramatic has the improvement been across all my EDS issues.
That is how you raise good accepting children!
Things I wish that people didn't assume about disability: That my walking stick means I have tons of energy and can wait, or worse - that it means it's okay to quickly overtake me then slow down in front of me, wasting energy that I don't have.
I haven't even watched it all yet, but as someone who suffers from EDS/HSD also, this feels like some of the best advice ever!
Thanks Jessica 💕💕✨✨
*just to add* I don't think Rupert is upset that you're not Claudia, I think he's upset that his timetable has suddenly changed without any real notice lool babies/kids sometimes love routine, especially when they feel it works in their favour. I was v.similar when I was little and my Mum wouldn't often get jealous 🥲
"He was born in June, that's prime time to harvest" 😂
"I personally would include ADHD and autism as disabilities". As someone who has 4 neurodivergences (ADHD, autism, aphantasia, and SDAM), 4 mental illnesses (C-PTSD, dermatillomania, depression, and generalized anxiety), and 2 eating disorders (ARFIF and binge eating), I personally couldn't agree more. Now that my C-PTSD has been under control for quite some time, out of all these 10 conditions, having ADHD and autism is definitely what is having the biggest impact in terms of making my everyday life more challenging. They are chronic conditions so, unlike the mental illnesses and the eating disorders that will progressively get better and eventually fade away, I'm stuck with these. Accommodations (like wearing earplugs) can only get me so far; they can help me manage my symptoms a bit better or make them less intense, but the symptoms never completely go away (and ADHD meds aggravate my autism symptoms, so those are not even an option). Being auDHD can be quite exhausting, not only because I sometimes feel like my brain is literally pulling me in two opposite directions at the same time (eg: novelty-seeking from ADHD vs routine-craving from autism) but also because, in order to be able to keep a job, I became a high-masker since I was a very young child and having masking alone consumes most of the spoons I have for the day. It has reached a point when, even when I'm trying to unmask, I can't do it anymore. As someone who went through over 3 decades of life being undiagnosed and feeling "broken" for being different and not knowing why, my mask is now so ingrained in me that I can never completely take it off; not even when I'm around my friends, family or even when I'm completely by myself. Out of all the 10 conditions I have, ADHD and autism are the ones I currently consider to be a disability for me, as they impact every single area of my life in a way that none of the others does.
Very few times have I waited like this for a video to come out, but I noticed that it was 10 to so I decided, hey what the heck
I have always thought that poor eyesight should be given more recognition as a disability. Many people struggle to buy good quality glasses every year and should be given a decent allowance towards this. Eyes are an important part of our bodies and we are all entitled to see as well as we can
It would be nice to have more disabling conditions be RECOGNIZED for being a disability. And that everyone exists on a spectrum.
I have asthma, and because it is so common it is often handwaved or brushed off. “Just use a puff of inhaler and press on!” Its not that simple all the time or with every person!
I imagine many folks who have chronic conditions feel similarly now and again.
Thank you for sharing.
It must be so hard when your toddler finds it difficult to process your absence when you're bedridden and shows it as rejection. Sending love. I'm sure that, with time, he will understand.
If you're interested in suggestions, read on. Otherwise, please ignore.
Maybe introducing little rituals/ moments of connection that are set through the day (maybe after waking up and before bed) that you can do together even when bedridden might help?
That is, if you can find something that works for you and is not adding stress.
It can be simple things like listening to a favourite song while holding hands, or closing eyes together and he lets you know when he hears a bird