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The Emotional Rollercoaster of a Chronic Illness Diagnosis: My Tips on How to Cope
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- Опубліковано 17 сер 2024
- If you're new here, my name is Kait and I have hEDS, POTS, Dysautonomia, and Sibo, and it's suspected that I also have CCI.
If you missed the first two parts of this series, you can watch them below:
Part 1 (symptoms, social/emotional impact of having an invisible illness): • How Ehlers Danlos Synd...
Part 2 (resources, what I learned after being diagnosed): • What I’ve Learned Sinc...
Resources:
To find a therapist near you: www.psychology...
EDS Society: www.ehlers-dan...
Body Grief by Jayne Mattingly: www.jaynematti...
00:00 - Intro
00:25 - My Diagnosis/ Background
00:51 - Things That I Have Learned
01:19 - Finding a Community
02:25 - Finding a Therapist
05:42 - How a Diagnosis Changed My Life
07:36 - Impact on Relationships
10:13 - Setting Boundaries
12:59 - Accepting my Diagnosis
13:43 - Becoming a New Person
18:12 - Society Does Not Treat Disabled People Well
19:01 - Dynamic Disability
20:27 - A Diagnosis is Just the Beginning
23:54 - Outro
Instagram @stateofkait: / stateofkait
TikTok @state.of.kait: / state.of.kait
Business inquiries: me@stateofkait.com
Having chronic illnes especially a "invisible" one...is definitely a roller coaster to say the least. I remember when I got my decision off being awarded full disability...i was 30 and I was angry, happy, relieved and alone. Thank you for these video's! ❤
So many complex emotions to process ❤
@@kaitgardner amen! 😘
Thank you for this video. I stumbled upon it today and it was just what I needed to hear. My life this past year went from healthy to several serious chronic illness diagnosises. I feel overwhelmed. I have such little support. Learning who is there and not there, painful. I feel energized right now to make some changes into living with what I have and just risk it. Make new friends. Reevaluate how I even spend a day, now that I am not working. I am glad you addressed the toxic positivity, I have found that extremely painful and dismissing.
As newly diagnosed just starting PT and oxygen therapy added to the handfuls of med taken daily, i look forward to an updated video. When you're ready, no pressure.
you are eloquent as shit and the kind of kind i aspire to be. so grateful you started this channel- my fave addition to YT this year hands down
That means a lot, thanks for taking the time to write such a nice comment
LOVE this video. I have MS and relate to every single thing you said, thanks SO much for spreading awareness and sharing advice 💜
Thanks for watching, sending you gentle hugs
Thank you for articulating these emotions and concepts that I could never explain. I will use this video in the future as a reference for my friends and family and partner.
Thanks for watching
Thank you for this video, I have been chronically fatigued for the last 30 years, told it was in my head. After lots of searching I finally got the hEDS and dysautonmia diagnosis and feel like I’m not crazy! ❤
Yup, that's my story too ❤
Shout out from a member of the MS (multiple sclerosis) crowd! 👋 🤛 I’m eight years in, and was just nodding and smiling the ENTIRE time I watched this video.
I, too, am blessed with a great partner, and felt a little gut punch when you mentioned the guilt that comes along with that. Interesting how that part affected me more than anything else. I have a feeling that if I were to have watched this video 1,3, or 5 years ago OR in the future, I would feel that same gut punch during a different topic you discussed!
You seem really well-adjusted and self-aware at the moment, so you probably already realize this, but I’ll say it anyway: You’re doing a REALLY, REALLY good job! I think you’ll benefit from having this video to rewatch in the future. It might not seem like it right now (?), but there WILL be times when you conveniently “forget” that you don’t just have a chronic disease, but also a degenerative disease. During the times when you FEEL that degeneration, you’ll be grateful to have this positive and realistic video to remind you of the things you already know about your strength and capabilities. 👏 👏
Awwww, thanks for such a thoughtful reply. I totally agree that there are moments when you forget you're sick. I'm just struggling right now because my meds just stopped working and my daily pain came back. I'm always at my lowest when I'm in a pain flare, but I'm trying to be positive and practice gratitude more than ever.
Sending you lots of love.
Thank you for sharing this!! I have a very close friend with a (different) autoimmune disease. I appreciate the validation for how I have been tryin to support her, and additional thoughts about how to support her. She will advocate for herself often, but not always, so I navigate checking in too often (stop, you're making me feed old!), or not enough, and then seeing pain on her face. It's taking time...but we are learning to navigate this together so I can be the best friend I can be. Thank you so much for your honesty and transparency.
You sound like an amazing friend, great job!
What an amazing human being you are, so well spoken and so strong. What a loss for the friends that you needed to cut out, the people that truly love you will respect your limits and have your back every step of the way. I am so happy that I follow you on all platforms as you are truly an inspiration to me.
Thank you so much for this video! Looking forward to the next one already. Wanted to share that October is Dysautonomia Awareness Month!
Thank you for this video/whether you have a chronic illness or not you have given so much wise advice in living your best life. You are very inspiring and strong. Sending you gentle hugs :)
Sending you gentle hugs back
Seriously Kait I cannot thank you enough for making these videos. I really admire your honesty and bravery here. I just got my hEDS diagnosis today, I’m turning 34 in March and your video helped me calm down a lot. I was having some serious anxiety and grief like you talked about- I had some relief and gratitude also. I’m actually going to start a spreadsheet right now because I can absolutely see how keeping track of everything could get messy. lol. I don’t have a huge support system right now but knowing that you exist is really REALLY comforting. Haha. Thanks girl I look forward to more of your content. ❤
Thank you so much! I'm planning videos for this channel soon and I also have new diagnoses to share so will update soon. Now that I'm a year and a half out of my diagnosis I can say confidently that it can get better!
Oh thats great news love, I'm stoked you feel better! I'll be looking forward to you updates!!@@kaitgardner
This video was really amazing and real. I know something is "wrong" with me, but not one doctor takes is seriously and it's really hard. I feel really alone with it and with my autism and mental health. I feel like a problem and not worth knowing and it's heartbreaking. It is so tempting to give up because life can't be this hard, can it? But your videos really help, to know you can be sick but still be everything to someone. To be loved by someone. Thank you fot talking about this. ❤️
I relate, I felt like that my whole life. Not a single doctor took me seriously for the 32 years of my life I was sick, and especially during the 4 years I was aggressively pursuing a diagnosis. It does get better, but you have to really fight for yourself. I fought HARD for four years- I saw a million doctors, 14+ physical therapists, and never gave up until I got a diagnosis. It can feel sooooo dark and hopeless at times but it's worth it to push for answers.
@@kaitgardner thank you for your answer. After watching your videos about how you struggled to find someone who listened but then you did and you finally got the answers you needed I know that I can't give up. Thank you for the inspirations to keep fighting.
Amen to the emotional roller coaster. I have a chronic GI autoimmune disease and was diagnosed a year ago. Very weird experience being a med student and chronically ill. My therapist is the best and my support group has been a game changer. Lots of processing grief and suffering, and I am doing great now! Thank you for sharing your experience!
Wow, I'm so curious about your experience as med student and chronically ill. Has it made you resentful of the medical community because it's so difficult to get the right care? Has your experience in the medical field helped you navigate being sick? That must be such a polarizing feeling at times!
@@kaitgardner Its very much so both. At times I know to ask for certain things, but navigating complex insurance issues is something totally new for me. I resent insurance for refusing the meds I need. I think I experience less resentment for the doctors because my disease is easier to diagnose than other illnesses. Even knowing the biochemical details of my disease doesn't make processing the wild emotions easier (like I thought it might!). Sometimes is makes the experience even more lonely because I go to school with mostly able bodied/non-chronically ill folks. What I can say is that I have a much more empathy and understanding of the patients I see. I would not choose to have this disease, but it will make me a better doctor.
@@senaitjudge-yoakam820 Your patients are so lucky to have you 🖤
Oh Kait, this video meant so much to me. Thank you for making it. While we have different invisible illnesses, I related so much to everything you said. I was born with Cystic Fibrosis but didn’t get so sick with it until I was 17 or 18. So in a way, I know what it’s like to know a healthy version of yourself & then a more “sick” version, if you will. Advancements for CF have come a long way & I’m fortunate for that, but I’ve gone through things no person should endure. I’d love a follow-up video on loss of friendships when chronically ill. You touched on this subject & as a 40 year old woman, this is so relevant to my life!! I’m grateful for you & for what you disclosed with us. Sending you love always ♥️😊🌻
PS-loved Thumper’s appearance at the end!
Whoa, we're medical twins. I had the CCI fusion in 2019, you can see my surgery & recovery video on my channel if you're curious. I'm trying a new med called Veozah nor for my dysautonomia which hopefully will help temperature intolerance. (as of now I can't go out in the heat or freezing cold). I'm also in the midst of getting my small intestine evaluated for slow motility. UGH, the comorbidities that come along with hEDS are no joke. My therapist was ESSENTIAL! She helped me so much. Great video.
The best tips for me from this video were preparing for the possibility that people will leave you as you start to advocate for your needs, and the pne about dynamic disability. Every time Ive noted a certain thing as a trigger but it doesnt trigger me this one time, or this handful of times, I fall into the spiral that I really was making it up after all, that I'm a "hypochondriac," etc. That has been THE hardest thing for me. I don't have a diagnosis, but I have been troubleshooting with half-hearted doctors for two years now and am finally prepping to advocate for testing to see if I have POTS. I have a feeling it runs deeper than that, but this is a start and your videos have really helped me feel less alone through this process so far. Thank you.
hi, just a little thank you for posting this video and sharing your experiences with others going through(or have loved ones going through) the same experience. definitely needed this, you are great. thank you
Hello Kait
I and at least 3 of my 5 siblings have what you have. I am 65 and have been dealing with issues for 40 + years. It isn't fun. People didn't know about all this when we grew up. As a result we are more damaged than we should have been by working through this all that time. I applaud you for getting on top of this as soon as you have and hopefully you can do what is necessary to minimize as many symptoms of all this. I am in Wisconsin. All the best.
im grateful for your videos.
Preach girl!! From one chronic illness sufferer to another, I get you ❤
❤️
I believe it's 21 days in order to develop a habit. Part of the problem with the medical system is a lot of the larger testing groups like for instance yell they only genetically tested 21. And they were one of the few people in the state of Connecticut to test. Right now we're trying to do a confirmation because they believe I have Type 4 and right now only Stanford and UCSF are the only people who genetically test and the backlog is over a year. There's not enough doctors/professionals for the specialties and we're basically were MS was 15 years ago. Everything was being misdiagnosed as something else it being explained away and that's the problem we have so many different symptoms that could potentially be something else. I learned things from both of your videos that I had approached my doctors with because they(my doctors) just don't know meanwhile the ones that do aren't covered by insurance.
They haven't developed a baseline of care and unfortunately a lot of practicing doctors don't actually believe that this exists more or less the secondary bachata music come along with it such as POTS, Dysautonomia, MCAs, Vaso-vagal syncope, etc.
Thank you very much for this video I honestly came at a very good time for me. I hit that brick wall of depression between Stanford and the insurance and although I know how to deal with the insurance. It is so incredibly stupid even within the networks that there are doctors with opposing thinking and that's why we get the anxiety referral to psychiatrists.
I’ve been there. I get you. Sending you lots of love
Ehlers Danlos Society Global Conference is in Philadelphia this year! Last year was in Ireland, summer 2025 it's in Canada. I'm currently doing the EDS ECHO Clinicians North America and learning tons. Multiple genes for hEDS have been identified; hoping we'll know which ones in the next two years. Currently the Connective Tissue Genetic Testing Panel on Invitae tests for the subtypes of EDS as well as aortopathies and other connective tissue disorders. If you post again and would like ideas on resources to share feel free to reach out. Thank you for your videos!
Who is your CCI doctor? I would like to investigate this condition too.
I’m also in NorCal and i’m struggling to find specialists to go to. My PCP has been sending me to several specialists but to no avail…I really need help. I want some sort of control over my life.
I listed my providers in the video about EDS on this channel!
Why do you keep leaving hate comments about Kackie on your alts?
"It’s bizarre to complain about views when her content has not improved or evolved. With TikTok taking viewers attention away from UA-cam, you have to do everything in your power to make your content stand out. It’s like that saying, “Insanity is doing the same thing over and over again and expecting different results.”"