BIID: Body Integrity Identity Disorder - Thoughts from an Amputee
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- Опубліковано 4 лют 2019
- BIID (also known as amputee identity disorder and body integrity dysphoria) is a disorder in which someone feels as though they should be disabled when they are, in fact, able-bodied. What it is really, and what do I, as am an amputee, think of it?
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Have you heard of BIID before? How do you think we can treat this subject with more compassion?
Footless Jo I know someone with it. I’d love to talk to you.
I actually myself have BIID, and I'd love to talk to you.
I have BIID and I'm 13. If you need information I'm here. (BTW I only discovered that what I have is something 'official' a month ago) I pretty new to it but I know what it feels like. I don't 'want' the part below my left knee.
@@s.g3894 your life will be difficult if you are an amputee .
Of corse i have heard of it i have biid
Hey Jo, I really appreciate you talking about this topic. As someone who does suffer from BIID I wanted to thank you for talking about this with such compassion and empathy. It makes me feel less crazy to talk about it and I am getting help from a professional but it is very touch and go because as you said there is not a lot of research on it. But I love seeing your videos and love the vibes you give out from your video.
Just wondering, are you on the r/biid subreddit? I recently joined, and it seems like a great community.
@@RealBanana I’m not. I don’t use Reddit as had some bad experiences with it that ended in legal matters taking action against some people. I’m glad it is a good community tho and the people there are good to one another
Your post chopping off your body parts better not end up on social welfare covering your living!
Wow. I am so grateful to have found this video! I do, in fact, have medically-diagnosed BID. Hearing such compassionate words from you absolutely melts my heart! Thank You!
Sincerely, it means a lot to me.
After all, it's kind of hard not to think of yourself as a horrible person for wanting to have a perfectly functional part of you voluntarily removed... I would know. In my case it's my left forearm. Midway between elbow and wrist. A 'transradial amputation.'
I've felt I should be without my left forearm since I was seven.
Again, thank you!
~Erika
I want either my leg or my arm amputated I've felt this way since I was 13 (1987)
Year late but I've never seen another person who wants their left forearm gone pog champ! I'm not diagnosed with BIID but I'm fairly sure I might have it (maybe not though it might just be some other weird thing)
Thank you for talking about hard things.
Thank you for caring to hear about the hard things :-)
I love how you talked about this with such empathy for both sides of the argument. Your compassion is so admirable.
I think I’d be in the opposite side of the spectrum, someone who probably should live more as if they are disabled because right now I try too hard to live like an abled person and it causes me so much physical pain :P is there a diagnosis for that? Probably denial lol
Off topic but you're becoming one of my favorite people on UA-cam.
Agreed!
Aww shucks you guys, thanks so much! :-)
Ditto
Absolutely!!
@@FootlessJo You're welcome (:
Hiya jo! I do suffer from BIID and have from a young age of 8. I don’t have a desire to be disabled, however I do feel as if my left leg does not belong to me. Funny thing is I am super active, scuba diving, hiking, biking etc. you are awesome in talking about this subject with such compassion and not being judgmental. You are now one of 5 people that knows about condition I have as I feel I can’t chat with anyone. If you have any questions I would be happy that chat with you. Your video piped up when I was trying to do research on BIID
Thank you from a health care provider for your compassion for those suffering with BIID.
I watched a show about a guy with BIID. He ended up sticking his own leg in a bucket of ice to kill the part he wanted removed. It was an eye-opener for sure. It was a good reminder that I don't know what's going on in the lives of strangers.
I have BIID and I can say from experience that this is by no means a choice. I want to feel normal, I want to look at my arm and not feel like screaming, but I can't, because those weren't the cards I was dealt. This disorder is terrifying, I'm always scared that one day it'll get too painful and I'll do something rash, that could kill me, or worse. It's not for pity, or resources, or attention. The urge is there to stop the constant mental suffering that comes from this disorder.
Nigga just keep your arm. Many wish they had your life
It's still really insulting to someone who lost those parts unwillingly to see people with BIID, choice or not. I would give anything to have a pancrease again.
@@Radiogirl1931 Okay but that's the point, right? People who are unwillingly disabled would like to have that part of them back. If a part of you brings you suffering in some form, I can understand that it would be really hard to deal with that. I would absolutely be insulted if someone wanted to have my disability because they thought it would be fun or easy. I had the same initial reaction that Jo did, then she helped to change my perspective. I still don't know much about BIID but I'm not insulted by it. It sounds really difficult.
@lailanitukuafu I get that, but it's still insulting to me. I understand it's a disorder but people who actually go through with voluntarily mutilating themselves is just too much. I can't fathom a doctor accepting that rather than get them into extreme therapy to try and find another solution.
@@Radiogirl1931 That's the problem. These doctors are supposed to help people like us get better, not take advantage of us. I've been in treatment for years and it's paying off, I feel normal again. They're supposed to give us proper treatment, instead they take advantage of a person in crisis and offer them dangerous procedures under the trust of being a doctor who knows what's best for us. It's dangerous, and outright wrong.
I'm the most angry and bitter person I know but you are able to make me smile. Thank you
Well this comment made ME smile, so thank you so much. ;-)
@@FootlessJo no problem I'm dealing with suicidal thoughts and chronic loneliness so you are a positive escape.💜
@@mckwan9383 forgive me for "butting in"... but I realize that we as humans allow ourselves into things we almost can't control. Like a smoker lighting another cigarette or someone hooked on porn going after another look... suicidal thoughts can be like that. Something you don't want in your life but there it is. Last February 17th my 20 y/o son shot himself in our front yard. He was lonely and depressed and the wife and I were to busy feeling sorry for ourselves to even notice or care. His obit will be up for a few more days "Aslan Daniel Lewis" at Gentry Funeral Home... I can now see he had good potential... and you probably do too. Aslan never took control of his life. He could have. Please step back and survey needed changes in your life and make those changes. Trust God... not the pretend one most people talk about but your creator. (Forgive me and give me a bit of Grace here) Recognize the good things about your life and nurture those. Attend to those and think on those. I now have an empty bedroom. A crushed heart and a completely different future. Funerals are VERY HARD! Trying to live without Aslan is almost impossible even a year later. I've likely written nothing that will help but there's my attempt to be helpful. Please PLEASE get help and win this thing!!! You can.
@@mrsparex ty for the words but I've made my bed. I have no one here. I am all alone no support system I use the internet as an escape. I'm about one step away from being homeless. I don't wish to live cuz I have nothing to live for. But again thank you means a lot to me even if I don't show it. It seems I have more people care online then in reality 😔 thanks.💜
@@mckwan9383 You're not blaming others. You're aware you've made mistakes up to this point. Most people fail at doing that. You're still in control! True you're in a bad situation but it seems you're clear about your situation in your thinking. Those people blaming others have lost their control over THEIR problems! Some things we can't fix... we can control how we react though. Please don't get irritated with my comments... I'm just a random guy on UA-cam so it makes no difference and our conversation in hidden in the replies so almost nobody will see them... I'm guessing your in Asia? Maybe in your late 30's or 40's (i like to guess)? ...Anyway your in good company here. I lost my son, beautiful Jo lost a foot and you've lost hope. Only one of us three have a chance to regain our loss!
Anyway I'm working on drywall in a cabin today and I suck at it. Thankfully it will be covered with stucco! I've been working on the cabin for 10 years now but it's close to being livable. I'll watch for you on Jo's videos and keep you on my mind now and then... and who knows... a year from now Jo may be doing "jogging videos", I may be "sane" and you may be somewhat happy! LOL
Thanks, Jo, for this very compassionate look at BIID. I suffered from BIID all my life and I have been a below knee amputee for 9 years. I love being that way and never get tired of it. You mentioned getting psychological help. I tried that for years, and it did not help at all. I have not heard of anyone who was helped with BIID by therapy. It is helpful to deal with other issues, and I think every BIID sufferer should try therapy for a while, just because some day someone may find something that helps.
With a below knee amputation, I have no disability. I am more active than anyone I know of my age (74). When I am not doing outdoor sports or moving heavy things, I prefer to use crutches and not wear a prosthetic. I feel that I am really me that way.
I expect that you will soon get back to being fully able-bodied and pain-free. Thanks again for the compassionate video.
Daniel Cooper thank you for commenting and sharing...
I suffer from BIID ((apotemnophilia)) as well for both of my legs above the knee. Can I ask how you accomplished your amputation?
@Phone man for buju You are extreamely ignorant. Yes they are fucked in the head because they have an awful mental health condition. Bipolar disorder & schizophrenia are two completely different mental health conditions, although will all 3 people suffer. Exactly it's a stupid, illogical urge because they are mentally ill. Shouting at them or throwing inacurate diagnosis their way us not going to help treat their symptoms, if anything it will make them more ashamed so even less likely to ask for psychological help.
@@Queen-rl2uo i guess...... maybe he put his leg into a bucket filled with ice. Dude im sorry but im BIID as well and r u trying to be an amputee?
Actually u'd better not dude.I understand that living with BIID is painful. I sometimes really want to cut off both my legs(below knee).But i didnt do that because i have lots of things i have to do.I have to look after my parents,i have to work.So when u are suffering from BIID,just think of others
Whoever diagnosed you in the comment section simply didn't watch any of your videos before they commented... This is really interesting, I appreciate your unbiased and thorough delivery. I remember years ago seeing a story about a guy that had a physically healthy arm but swore up and down that it gave him unbarable pain. The doctors said there was nothing physically wrong with it and refused to amputate. After years of suffering and begging countless doctors he built a guillotine in his back yard and a raging fire next to it. He put a tourniquet around his arm, chopped it off, threw it into the fire and waited for it to burn beyond repair before calling 911. Unfortunately the story still didn't have a happy ending. He still had phantom pain equally as bad and if I remember correctly committed suicide. Very sad stuff. I hope people with your compassion in the medical field will really pursue studying this and shed more light on what's going on and get these people whatever help they need. Wether physical or mental.
I have a couple of friends with BIID. I think it's fairly common to be accused of having this disorder when in the position to choose amputation for a better life. I have been accused of having this disorder as well because I can go on with my foot for years and just deal with the pain, but I want my life back. My friends with this disorder laugh because they know I don't fit the criteria for it but it still kinda stings when people don't take my pain and my quality of life seriously.
I was never even aware of this, thank you for shining light on this topic! Interesting.
Thank you for listening and caring! 😊
Wow, you are educating a lot of people!!! Never heard of biid before. Unfortunate people pass judgement without really knowing full situation.
I’ve heard that this disorder happens because of the brain not mapping the body correctly, which explains why wanting a limb gone is so prominent for people with this disorder. I wish that there was more known about why it happens, because then I think people would have an easier time understanding what they’re going through rather than calling them ungrateful.
I was just reading about that some more today, actually! That would make perfect sense, actually, as far as brain mapping I wish there was more known as well - understanding is so much better than judgement and mean comments.
It's so refreshing to see someone talk about this disorder with compassion, most of the time when I try to tell people what it's like living with BIID they react very negatively, hell, I've gotten a couple death threats online because of it.
❤
From what I've read, BIID is almomst the opposite of phantom sensation. It has to do with the brain's map of the body. Phantom sensations happen because the brain still has a map of the missing limb. BIID is when the brain lacks a proper map of the affected limb.
Hi Jo, this is my first time commenting on one of your videos, but I've been watching your channel for a while now. A few times I thought to ask what you thought about this topic as I myself suffer from it, but so much of the portrayal and commentary on BIID online is so negative and I was afraid that if I even brought it up anywhere on this platform I would just get harassed... But seeing how you talked about BIID in this video honestly brought me to tears (sorry for the dramatics lol). I've struggled with the amputation variant of BIID for most of my life but only recently was able to put a name to what and how I was feeling, and after seeing so many videos making fun of, ridiculing, and outright calling people with BIID crazy and saying they deserved to die? Your words were so sympathetic and understanding I just can't thank you enough for this. Sorry for the long paragraph 😅 God speed on your personal journey ♡ thank you again ♡
First of all, let me just say a huge thank you for your comment and for choosing to share your story with me - truly! That means so much to me. I was really worried about how my words might be taken by anyone struggling with this...I'm not an expert and I didn't want to sound like a jerk. I'm glad that what I said came across in a compassionate way at least. I can only imagine some of the comments people must make and that saddens my heart for you. I'm so glad that you have a word for what you've been dealing with for most of your life. I've always found that having terms for things helps - I don't know about you. You're not crazy and you DEFINITELY don't deserve to die. You deserve to have a full, beautiful life. You're struggling with something very real, and I hope that the medical and psychological world comes to a better understanding of how to help very soon. All the best to you on your journey!
@@FootlessJo I definitely agree that having a term for what you're going through helps a lot in understanding what it is and how to treat it. I sincerely hope as more research is done, an effective treatment can be found. I was actually given the opportunity to be a part of a BIID Research Study this past October and I hope my little contribution will help the overall understanding of it in the psychiatric/medical world! You definitely did not come off as a jerk in my opinion! I know I can't speak for everyone watching this video, but you were absolutely respectful about it and I appreciate your honesty about your initial thoughts about it because it's perfectly reasonable to think that way about something you only have surface knowledge of! I'm glad you chose to learn more about it with the goal of trying to understand the people who go through it. So many people I see only know the basic concept and base their entire opinion on that, and usually with a negative or hurtful approach... It's exactly like you said: the world needs more compassion. Thank you again so much ♡
Hey! I have biid as well and i feel very lonely, ashamed and hated. Id love talking with someone who also have it to share experiences, relate to each others and just support each others in the healthiest way possible. Do you have an instagram? Or whatsapp? So we could talk. It would awesome!
@@stephantyrone8678 It's always nice to find connections with people going through similar situations as you! I do have instagram: @postgrad.adventures I'd love to compare experiences and share different healthy coping mechanisms I've discovered. What's your instagram?
@@InStarrySkies my instagram is reynard.hd105906b! Thank you for sharing yours!!
Another study found there is something wrong, the neurological make-up like the mapping may not been finished, and brain scans can prove this however the person have to be able to point this out, I have this disorder and I think I mentioned this before? I struggle a lot because it's like when you get the urge to just start to hurt your own self, you may find yourself doing it but not want to, I've gotten better at catching myself at this
I'm so glad that you've gotten better at recognizing and catching yourself and hopefully not hurting yourself...I hope I conveyed it well in the video, but I truly am so sorry that you're living with this. I can't imagine what it must feel like to have a part of you stuck there that feels foreign and like it shouldn't be there...I really, really hope that more research and better treatment and understanding is brought, soon. 💕 Thinking of you.
I hope with research there will be a cure! Or at least medication to really help you...
Until then hang on tight! It's just a condition that makes you want to do it, just like suicidal people with depression don't actually want to die, it's the depression speaking out of them...
I can't imagine how hard it must be to wake up every day with something wrong attached to you...
But I can relate since I have my own mental struggles to deal with.
Don't give up!
@@steinistein8611 they do have medications I can't remember what they're also used to treat but they never worked for me, as I don't really like the side affects of pills that caused me so I've just live it till either studies make something without nasty possible side effects or other means to relive the urge
@@legend1175 that's what I meant, I know that most medications have side effects that are actually worse than the condition they're treating 😅
@@steinistein8611 ah sorry, yeah that's why I avoid most medications
Thanks for being so open minded about this.
I used to have BIID in my younger life. Now I've decided to accept what I have got, though to be honest I never truly grew out of it. I really respect those who decide to fulfill their wishes, it truly takes a lot of courage to make such a decision.
hi everyone :) for anyone here that's still having an issue with accepting individuals with this disorder, you have a neuroscience major here :P! People with BIID have damage to their parietal lobe, which in charge of your sense of self in space and bodily awareness! Their brains are not the same as a healthy control! Please find sympathy for everyone who you do not understand, just like Jo says!
I know that this comment is a month old - but this makes me think of the whole phantom pain/sensation phenomenon that amputees experience.
Parietal lobe probably keeps assuming you're still supposed to have that part of you from some pretty strongly enforced pathways. Especially if it happens later in life, I would think.
So it makes sense that this would be kind of an inverse of that.
(I find sensory processing stuff fascinating - esp the lesser talked about ones like proprioception.)
That’s such an odd disorder. Kinda goes against your bodies natural want to stay whole and intact. Do you think, in the case of the man you mentioned, that it may even border on a type of self harm? I myself have struggled with self harm and to get past your bodies instinct of natural self preservation takes a LOT of mental anguish and a LOT of struggle. You always get my brain working, Jo. I appreciate ya!
It totally is self harm if they are putting themselves at risk of harm in some way just the same as drinking or smoking is self harm or even not driving carefully.
Would a lithp variant be theriouth thelf harm?
@NPC #34254334 Response: something I struggled with for a while :) been 18 months now if you don't count a packet I had a couple of months a go and one cigarette at Christmas. It's a tough thing to do and can take many attempts before you crack it.
Late reply, but while it is technically self-inflicted harm, self-harm isn't what's at the core of the impulse, and is more just an unfortunate side effect, and is even often a major barrier preventing people from following though on their desires. The long and short of it is an obsessive need to be a certain way that you are not, and when action is taken, it's done with whatever means are available.
To put it as simply as possible, everyone has a mental map of their own body, a self-image with which they identify, where when they see themselves in the mirror and it matches what they expect to see in their head, everything is okay. But for some, that mental image is significantly different from what they see in the mirror, and it can be incredibly distressing, to the point of massively hindering your ability to function day to day. This is body diamorphia, and it can take a number of forms, be it a woman wishing their breasts were larger, or someone wishing they were taller or shorter. (Note, the presence of such wishes alone is not indicative of a disorder, only when the distress is great enough to negatively and significantly impact quality of life)
BIID is in essence a very rare and extreme version of this kind of disorder where the desired change involves, or is even centered on, a loss of physical functionality. And to be honest, it's debilitating. If I wasn't terrified of medical bills enough to ruin me, I'd have probably taken some form of action myself, and there will be months at a time where it's all I can think about.
@@becca413b no because both stem from completely different processes. In self harm we injury a healthy part because it makes us feel in control when everything else seems out of our control. We don't want to cause permanent damage and preferentially we want to feel the pain without causing much damage. In Biid its not the pain or the damage, it's the removal of an alien part that doesn't belong. If a certified professional cant or wont help them (the professional oath avert them) they themselves cause so much damage a profissional stands forced to do something to correct and save what can be saved. it's about redefining the map, the silhouette of the body with a new demarcation.
This was such a kind and level headed approach to a really sensitive topic
Thank you for this video! I have BIID, or at least I suspect that I do. Ever since I was a little kid, I've wanted to have my left eye removed and to have scar tissue there instead. I have attempted to cut my face and cut my eye out, but I was so frightened, only ended up doing a very small cut on my cheek that healed up within days. My cellphone battery is swelling and people say it's dangerous. I keep it beside my pillow every night, hoping it might explode in my face. So my BIID is focused on my face and eye. It's not super specific, but my inner struggle ranges from wanting a scar over the eye to having half my face entirely re-arranged. I go around with an eye patch on sometimes, although I do not need to, medically.
I think I know why I have this... because thing is I'm already disabled, just not physically. I have autism to such an extent that I'm considered unable to work for life. Yet I've been bullied from early childhood for my invisible disability. As an adult, it's instead scoffed at and rejected. All my life people have told me I'm lazy and just not trying hard enough. I think I just want my disability to show on the outside, and for my struggles in life to be respected.
Additionally to my autism, I'm deaf on my left ear since birth. It's a hearing impairment that's not "bad enough" to be considered a disability at all. But that doesn't mean I'm unaffected by it, it means that no one gives a fucking shit about how it affects me. No one can remember which ear it is, so they always walk/sit on the wrong side of me and then they play stupid when I keep running over to their other side. I'm tired. I've done that my whole life. Not even my mother can remember which ear it is. So, I don't think it's a coincidence that I wanna be very obviously blinded on my *left* side. To make people notice a physical issue that I already have. People don't care about issues that aren't visible. That's a big problem with society in general, I think, that "if I can't see it, it doesn't exist" ableist mindset, but also, unfortunately makes total sense. I too have trouble trusting and remembering things that aren't clearly visible. I can't know why other people with BIID have it, or speak for them, but I think it could be for similar reasons as I do.
I feel really bad for people who are disabled and wish they weren't, as would be probably the very vast majority of people with disabilities. I'm very sorry you lost your foot. I actually genuinely am. Because clearly you didn't want for that to happen. Although I wanted to say that some people with BIID are actually disabled themselves too, as in not by choice, and it can be quite a moral dilemma, of essentially wanting to become *more* disabled, instead of less.
Also, as a transsexual (female to male) I think BIID feels similar to gender dysphoria, except it's just even more fucked up. I wanted my breasts gone, and had a double mastectomy. Now I'm happy with my chest. But then that I want half my face gone too, is just a lot harder even for myself to grasp. I don't identify as transabled though, that feels too politicized. I didn't choose this, any of this.
Your comment moved me, I'm honoured to get to know your story. I subscribed to your channel and will watch some of your contents as soon as I wake up next time. Maybe it encourages me to start my channel to tell my story as I promise to myself all the time lol
As someone with ADHD (that went undiagnosed for the first 25 years of my life) this makes SO MUCH SENSE.
It can be so hard to constantly struggle with a condition that affects every single aspect of your life only to have people invalidate and dismiss it because they can't see how it affects you. I completely understand why you would want to have a visible disability, because then people might actually respect and accommodate your disability.
It never really got to be anything more than a day dream for me, but as a kid I even remember wishing I was visibly disabled or sick, or that something would happen to a family member or something. I would even lie sometimes to gain sympathy, or do things like self harming to get attention.
Now that I'm older I spend more of my time wishing I wasn't disabled, but back then I didn't know I WAS disabled. I just thought I was weird and lazy and too sensitive and had no idea why everything felt so hard.
I felt so guilty and wrong for it but all it came down to was wanting someone, anyone, to care about me, to see how much I was struggling. Being ND can be so isolating, what's going on on the inside doesn't match the outside in the slightest, especially when you've spent your entire life learning to mask. It feels like I've never been truly seen or understood. So I get it I think. Genuinely, thank you so much for explaining.
every time I feel or look at my legs I want to scream
Your compassion towards the individuals with BIID is truly inspiring. You are able to look past your own feeling to sympathize for them
I love how compassionate you are. I used to want to be deaf as a child/young teen and would try and damaged my ears but as I got older I realised going deaf wouldn't stop the voice in my head. It takes a lot for someone to harm themselves like that. If going deaf would get rid of the voice I hear I would take that option. Living with it is horrendous and often dying seems like a good solution so in comparison to death being deaf doesn't seem so bad.
For the record, if a person doesn't acknowledge that the limb is naturally their own, they do not fall under the category of BIID. Also, as someone who has studied this in depth as a bioethicist, there is data that suggests that there could, in fact, be a physical cause of BIID, so it's quite possible that the limb is not actually "healthy." :)
Thank you for your input on this, Sarah!! I'm always open to learning more. I love that you've put significant time and research into this from a bioethical standpoint. 😊
It seems as though you feel like you have to defend your decision to other people. I'm glad you address the issue in a very awesome way. I did see a story where a fellow decided he needed to have his leg amputated below the knee and was unable to convince the doctors to do it. So what he did was put his leg into a container of dry ice and ultimately had to have his leg amputated below the knee. And I believe compassion is the answer for people have struggled. You're awesome.
I love your positivity so much! Thank you for educating me and for making my days brighter
I don’t feel like you had a decision.you weren’t healing and that’s an impossible choice. I was born 35 years ago with my entire right side is disabled. I’m with you that I’d give anything to be 100% able bodied. Ive always felt different and like a burden. There has been a lot of times when I thought that cutting off my right leg would help but that was a terrible teenage thought. You are honestly a beautiful soul and I admire you a lot. Thank you for make me feel a bit more normal. I would love to shoot the breeze with you one day.
There's a condition called asomatognosia that can happen after a stroke/damage to the right parietal lobe, and it causes the person not to recognize a limb or even half their body as belonging to them. There's also somatoparaphrenia, which is where the brain basically compensates for this strange presence of body parts it doesn't recognize by coming up with explanations that they belong to someone else.
BIID appears to be related to thus phenomenon. "Research provisionally found that people with BID were more likely to want removal of a left limb than right, in accordance with damage to the right parietal lobe; in addition, skin conductance response is significantly different above and below the line of desired amputation, and the line of desired amputation remains stable over time, with the desire often beginning in early childhood."
as someone who had Body Integrity Identity Disorder, i suffered from serious depression until the day i cut my hand off in a bandsaw, after that i never had depression again and even found life got easier for me, and 7 years later, ive a loving wife, and 11 kids and ive never once thought about if i regret it, because i dont
Thank you for a great and compassionate video. This is my wife's You Tube account, but I am Chloe Jennings-White, one of the people with BIID you mention in the video. I would like to add that around 75% of people with BIID already have disabilities not of their own choosing; so it is not really about able bodied people wanting to be disabled. If that were the case I would have been automatically cured a long time ago! I have had Fibromyalgia since 1986 and an accidental Spinal Cord Injury since 2006.
By the way, I, Chloe Jennings-White, referred to in the video, am completely open to answering any and all questions about my BIID.
You're amazing and so strong! Your videos are amazing and have showed me so much.
Thank you so much for being here!!!
Thank you for this!!! More awareness is DEFINITELY needed!
To me, BIID is almost like Gender Dysphoria. You have something, but you don't necessarily want it for a number of reasons and it can be very upsetting to see it and not be able to do anything about it. I'm somewhat dysphoric with my chest where I don't want my boobs some days and it just puts me in a mood and makes me feel crappy. Why are people slightly more understanding of that, than someone who doesn't want a limb or something, because they don't feel like it belongs there?
I have gender dysphoria and going into researching BIID made me cry a bit, their pain is so familiar and it’s so sad to me, some people will bind their legs back and at the peak of my dysphoria I would tie long strip of cloth around my arms and torso and tie it so hard, I thought if the Chinese could bind feet and permanently shape them, maybe I could make my shoulders smaller even with the risk of damage, I also feel like a big piece of my humerus head isn’t mine, I felt dissociated from it it felt like it was foreign it felt like a cancer growth, when I saw a woman say she would have her legs amputated immediately if she could I was taken back to all the thoughts I’ve had about getting clavicle shortening or even facial feminization surgery, beyond that all the similarities of BIID and GD was crazy, not to mention the overlap(one paper said that 19% of those with BIID also have gender dysphoria which is a pretty big number)...hopefully one day we’ll have a deeper understanding of these, and I do feel lucky to have the one that is a bit more relatable to people
You have it spot on, it’s not a “need to be disabled” (considering many people with BIID are already disabled), it is BODY INTEGRITY IDENTITY DISORDER which is basically an advanced form of body dysmorphia, which is yes something that many trans people experience from.
@@kimchi2780 treatment are not succesfull. People with biid usually have to endure their disphorya for all their Life with the help of therapy, Just like the ones who have gender disphorya . Science Is not that developed on the brain field , so if we can't jntervene in the brain , to me they have the right to find happynes and live their Life doing what they feel the Need to do to themselves. It seems innatural but in the end all disease , both physical and mental , come from nature
Btw : biid Is a real issue... They choose to disable them selves but they didn't choose to have biid and desire to disable them selves
I’m both trans and I have BIID and it’s incredibly painful. I can even mark out the exact spots where my legs aren’t mine (about 4 inches down.)
because they're bat shit crazy
Hi! I’ve been watching you a while and I love you and your Channel!!
I just love how you approached such a hard topic. So much compassion it just warms my heart :)
You’re amazing keep doing what your doing!!
Thank you so much for this video. Love your vibe and your take on the subject with compassion. I can relate to that on so many levels. Big cheer for you
Well, "by choice" is debatable. Don't misunderstand, I know you decided(in favor of less pain), but you are making progress. I believe in you😊😊😊
I found this video while researching for a video responding to The Illuminaughti's and thank you for being so much more compassionate.
And then I realised that you're Footless Jo from Jimmy's channel!
Heyo!
Ive never heard of this condition
Thanks for new info 💕
Oh my goodness! What a treat to come home and see another and even more fascinating video than the last. I actually work in a job where we deal with intellectual and physical disabilities including mental health and addictions... and I thought we had some interesting topics come up while in training, but this really sparked my curiosity. I have many thoughts on this, even though I haven't encountered BIID in the line of work I do. In reflection, I've thought about a few ideas on this, but unfortunately like a lot of things that we don't have much knowledge about yet, I'm sure it may be considered a little too controversial for some, so I'll just leave it with, your video again gave me much food for thought.... and I love that!
AgentClaytonWebb I’m so glad that you found it interesting! 😄 I think it is great that you work in a job dealing with mental health, addiction, and disability. I think your comment on having lots of thoughts but being unsure of how controversial they may be due to our lack of knowledge on the disorder makes a lot of sense to me. I think it’s easy to make far reaching assumptions or comments to either extreme side...in short, I hope more research and light is shed on this disorder soon. 😊
I’m so f*cking happy I found this 😂 I’ve been acting disabled since second grade and would pray every night I’d get into an accident and loose my right leg! Sounds awful but I’d cry over it every night and I just found out it’s called BIID!!! To bad it isn’t legal to actually do this :( but hopefully someday it will be so I don’t live in awful pain everyday!
I pray you still have your right leg and have sought to discover why you would want to remove a limb... The body is an amazing creation; what a wonder to walk, run, dance and much more with this beautiful gift from our creator. Take care.
Footless Jo! Very graciously answered darlin.
love
Steve Holliday
Steve, I'm so glad you feel I did it at least a little it of justice. :-) Thank you so much for your support!
Thank you for bringing up something like this. I have honestly never heard about it before, but appreciate you informing us of this. I can't imagine anyone wanting to have chronic pain. If I could turn back time, I would do anything to change the way I feel now. I'm assuming that this other disorder is awful too though. I hope there was something that could help them.
As an amputee, when I first heard of this I think my reaction was like yours. I felt offended, really. That someone could be envious of me, when I have to deal with all the niggling little things I have to deal with as an amputee.
But there is quite a lot of variation when it comes to how people feel about themselves.
I think we need to be careful when we say "No medical need to do so." because there can be a lot of reasons someone might want to have a medical procedure performed on them.
If a woman thinks her breasts are too small, should doctors bar her from having them enlarged? I think most people would think she should be allowed. In fact this operation is performed thousands of times a year. In most cases there is no medical need for her to do this. I'm not sure BIID should be blocked on the grounds that there is no medical need. There may be other reasons to bar it, but if we allow anyone to have any surgery even though there is no medical need, then we can't really bar anyone from having surgery on those same grounds for anything else.
Personally I don't think I know enough to have an opinion on BIID.
I do think people might regret having an elective amputation. The fantasy of what they want is rarely the same as the reality. Perhaps *THAT* should be grounds for baring it.
The fantasy of what they want is rarely the same as reality? Where did you deduct that from? Because it's far from the truth. From any research that has been done so far (very minor), and from any comments of experiences of people online that have gone through with it, there are basically no regrets. Just as there is no regret after a sex change. And that makes sense that there are not. If your mind knows the way your body needs to be, an adjustment to that way can only be comforting. There is even a research showing that in some BIID amputation cases there is no phantom pain, precisely for the same reason.
Also, the problem is that you, as an non-elective amputee, have a completely different experience with your own amputation than the one of people who want it. So rather than assuming how it might feel for them based on your own experience, it would be more essential to consider how you would feel if you were in their place and state of mind. This requires a much deeper understanding of BIID, which people do not usually bother with.
Sorry but feelings doesn’t MAKE REALITY
@@cdhsjsa2294 So you think feelings are completely irrelevant?
Is that just other people's feelings, or your own as well? Tell the truth.
If you walked into a fancy restaurant and the host said, "Sit your fat ass down and you will accept what we give you without complaint and keep your damn mouth shut." you'd be just fine with that?
Tell the truth.
Chloe, the woman in the leg braces, is very opened about it and a wealth of knowledge on BIID. I don’t know if the article you read gave her full story, but some of her disability is real. I’ve connected here with a couple of disabled friends who were appalled at her existence, and they are now good friends, too.
I would ask this: is being transabled and different than being transgender? I can’t imagine having my man parts removed and woman parts installed any more than I can imagine being disabled by choice. But, I fully respect those who do believe that they should be who they are not already physically.
Oh, another interesting fact, many people who are transabled actually are disabled, but believe they have the wrong disability. Or they wish their disability was more severe. There are many disabled people who fit in that middle gray area. They are just disabled enough that they don’t fit in the able-bodied world, but they really don’t fit in the disabled world, either. This is extremely stressful on them, and they are some of the ones who may try to become more disabled so that they fit in with one group.
You are rocking it!!! I love your videos.
Another question: Did you get some kind of answer to the scan yesterday?
Thanks for asking! I won't know for a couple days...keeping my fingers crossed. ;-) I truly appreciate you checking in!
Coming from the channel of a worldwide renown spokesperson for the blind and your stance compared to her is refreshing like a spring breeze. Loved you instantly. You have my heartfelt admiration, dear lady.
Hi Joe ! Really interesting video especially as a disabled person yourself your insight into this is important. I have just finished my masters thesis on the ethics of amputations for those with BIID. Just one point to note …
At 2.22 you state that the individual concerned says their leg is not their leg - it does not belong to them. This technically isn’t correct and is important. Individuals with BIID know the affected limb is theirs they merely feel as though it shouldn’t belong to them. This is significant, many have attempted to claim that BIID is delusional and individuals believe thir leg doesn’t belong to them. Rather individuals with BIID accept the leg is biologically and physically theirs, merely that they do not perceive to be part of their ideal body.
This means that individuals with BIID are rational and non delusional people - something which many people get wrong.
I hope this clarification helps!
Omg I agree wholeheartedly. I read about this disorder a while back and felt the same way you do. I haven’t heard anyone agree with me yet! Ah I’m becoming obsessed with your channel. Also I love your ratties!
You handled this subject with so much more compassion and grace then I think I would be able to in your situation. There must be something strange going on in the brains of people with BIID to want to hurt themselves like that. I hope that they can figure out some good way to treat it. I heard of it in a novel, but I didn't realize it was so amputee specific.
Great topic and compassionately handled. There are so many disorders where amputation is a choice that has to made for medical reasons to improve quality of like. This post reminded me of a young girl (5 years old) with arthrogryposis. It results in deformity of body limbs that severely limits independence. This little girl wanted to be able to keep up with her friends. The family and this little girl jointly decided on amputation. She is now a little older and very happy with the decision. She goes to dace school , rides a bike and is generally independent.
We need more understanding people like you.
I think I have a little understanding of BIID, I'm not saying I know what it's like, everybody is unique. Since puberty I wanted my uterus gone, I initially assumed this was a response to crippling menstruation problems. It took almost 20 years to find a doctor who took monthly problems seriously, and medication stopped the cycle, but I still desperately wanted a hysterectomy, my body felt wrong. When I did eventually get one I strangely felt 'whole' (not the reaction my doctor or counsellor expected).
On the other hand, as a wheelchair user in constant pain, I also feel I understand the 'gut reaction' of people 'faking' disabilities, but people with BIID, while they may not have a physical problem, are NOT faking. They're not looking for sympathy or financial gain, it is a very real problem for them.
On a slight tangent, I'm wondering what really is the difference between amputating an 'alien' limb and gender affirming care for mental wellbeing?
I’ve been accused of hypochondria and have considered that I might have this, and I struggle to tell if my pain and medical issues are real or if it’s just that. I’m looking into pursuing a diagnosis for hEDS, since I have a history of sprains and fractures, arthritis, POTS, and more, but I’m afraid to bring it up to my doctor for fear of being accused of hypochondria or BIID.
Very well put
Great video. I had never heard of BIID before. You deal with this complicated subject with a lot of compassion. You also made me remember that when I was getting back from a broken leg a few people did say they wanted to know what it was like and they wouldn't mind the experience. I wonder if that's related?
I think it is related. I have myself BIID and I don't want crutches or a wheelchair but a prothesis. A broken leg is kinda also something I would like to experience. Yep I know it's weird but my mind is wired that way.
@@s.g3894 Thank you for opening up about this issue, Sofia. I think that takes a lot of courage. As I said, I don't understand BIID but I think you could provide some insights.
I have a condition called EDS so sometimes I get urgers to have my leg amputated or use crutches if wheelchair to relieve the discomfort, I hope that makes sense
Ever notice that everybody has some fetish about this now, winding up in a compromised condition,whether short or long make believe or real. Why is that occuring, you know, I do; its done for attention! Not popular, no friends, you are socially done. Now, add body/mind issues, and you are finished! Okay, watch this:
" Just read this about your EDS, and I must have same thing because my most favorite desire is having physical problem that requires a pair of crutches, because I am now crippled. Would be so exciting to be with another with similar condition Be careful you don't wish too hard or you become one! So, I went phys. 6 years, 6k miles, knee dis., then 30 months on wood crutches, now 3 months(1 month I.V. hospita) in wheelchair both legs involved. No faking now,no need crutches! Hey its a lot of fun if you join .me or not I wish you luck!
See your big health issues sooner or later, looks bad, very bad!
I did know one man who had BIID who orchestrated an amputation of one lower leg. And he was very happy with the decision (basically he damaged the leg so much that doctors were forced to amputate). As a devotee, I don't really understand BIID or pretenders, but I'm glad you treated both with respect in this video.
Some studies have shown that the area of the body they feel shouldn't be there is missing from the "map of their body" their brain has; so if you close your eyes you can still touch your nose because your brain knows where all the bits of your body are even when you can't see them. But in the case of BIID, even though they can move their limb and can feel it the sensations from it, somewhere in the brain the information is being processed differently (or for some of it maybe not at all) which leads to this very clear feeling of it not being like the rest of their body.
I’m curious for people with BId, and probably there would be different answers, if you had two buttons, one that if pressed would make you feel fine with your body as is, and another that could make your body the way you’d like it right now (so what ever part you want amputated just poofs out, which would you rather press? I think for people who would rather press the second we should just give them a safe means of getting the change they want.
In my opinion from what I know as both a newly qualified counsellor and a disabled person I can appreciate that although BIID isn’t a physical illness it is just as much a disability as someone who is a wheelchair user
People with BIID are chronically suffering and it is disabling as it is for someone born with sight loss it affects there every day life and it shows real courage from the people in the comments that are speaking out about having this condition
I admire the courage and hope u r all getting the support you deserve
Can you please do more videos on your rats and other pets??
P.S. I have no idea how I found your channel, but I'm so glad I did your personality is so bubbly and I just smile the whole time watching your videos
Huh. I read something about this recently (a mention in a novel ) but had otherwise never heard of it. Ya learn something new every day
Like the old TV series NAKED CITY said...there over 1 million stories in the city. This is one of them. Come to today there are over 7.5 billion stories on this planet, BIID encompasses its share of stories. The only thing you can do is pray for their healing. Maybe the answer is an actual amputation or maybe just someone lending an ear. Whatever the answer is, it is an issue society needs to pay attention to so we can help someone ease their psychic pain. As you said Jo compassion is needed. You are a very thoughtful person who can look beyond a knee jerk reaction.
I have never heard about this. I feel sorry for them and need so help.
Marilyn Scull I hadn’t heard of it till a couple months ago either - I truly hope that more research is done and better more understanding treatment is discovered soon.
Wow this is so interesting I never actually knew this was a disorder. Like you said I can imagine someone who is suffering with this must be tormented on the daily and feel like their only option in their mind is to chop off whatever body part they believe shouldn't be there. My first thought was to get frustrated but then I realized that people with this disorder probably get criticized all the time for the way their mind thinks and they can't help it. So as an amputee I choose to have compassion instead of spreading negativity.
Exactly, Chen! I feel the same way. Its easy to rush to judgement and negativity, but compassion is so needed in the world. You're awesome. 😊
It's almost a mirror to phantom limbs. We know the brain often thinks a limb should be there when it isn't for amputees, it's reasonable that it might work in the other way, that your brain does not perceive your limb as your own.
i dont have this disorder but i have had times that i wished i had no right arm...
in my case its because i have severe ocd...
for some reason i feel like everything i do with my right arm i must also do with my left arm... it has been so severe that i started to avoid my right arm... i actually rode my bike only using my left arm all the time even when it became dangerous...
i would genuinly have been very relieved at that time if my right arm would have been cut off...
i'm on good medication now which calms down the ocd so luckely its not that severe anymore...
i felt like sharing my situation because who knows there may be a connection between these disorders...
I have these feelings and thoughts, but it's also the part of my body that's giving me the most trouble because I am disabled that I don't see as my own. Mind you I usually don't see my body as my own.
The late Dr. Oliver Saks wrote a really good book about freaky neural disorders. Very interesting - I highly recommend it. It’s called “The man who mistook a lamp for his wife” (or something close - I just scanned my bookshelves and didn’t find it)
My opinion is this: mental disorders and mental pain are not less than physical disorders and physical pain.
People who suffer from BID deserve the utmost compassion and empathy as they deal with very unfortunate, often intense, very distressing symptoms. I think amputation needs to be a measure of last resorts. I know that some with BID are happier after having an amputation, but more studies need to be done on this population to ensure that doctors can determine for their patient if it is a justifiable course of action.
I don't see people with BID as "selfish" or "glorifying disability" in most instances. They're rational and they know they aren't like most people. Most won't go up to a combat vet and say "ugh lucky." If they do, they're a jerk.
I can also understand how many disabled people have a kneejerk reaction to the severe presentation of this disorder. Y'all went through a traumatic event that caused you to lose a part of yourself through no fault of your own. I can empathize the emotions a blind person who wishes they could see their child would go through when they see a person with BIID who intentionally blinded themselves. More understanding is needed on both sides
I remember seeing some study or something on www.reddit.com/r/biid/ that indicated that therapy can help but isn't permanent, and usually lead to worse symptoms later, basically just delaying the problem.
Mental illness is sad. Doesn’t matter whether it makes someone seen as a “bad person” or not. Whether you are depressed or a “psychopath”, your quality of life goes straight down. Even murderers aren’t happy, accomplished people. It’s sad for everyone.
I have mental illness. It is sad.
We have to accept that mental illness is disability too, and deserves proper treatment and respect (not enabling disordered thinking/behaviour, but approaching with empathy and taking it seriously)
It’s crazy this isn’t in the DSM-5
i am suffring form BIID it was so bad recap i am a marine bioilgest and when i was in a cage and a great white came up i tried to put my arm out so it chould bite it off i am trying to find somewhere where i can get my amputted
I believe that there has been some neurological studies that give some credence to hypotheses indicating that. Some of the cause may be due to anomaly in the physical brain structure,
I have been in a wheelchair for 5 years and not by choice, I have Poly Neuropathy and Fibromyalgia, it's incredibly painful and crippling, I am very limited in daily life, I got sick 5 1/2 years ago.this is something that changes everything about daily life. Please forgive me but I just can't get my head around BIID. I really hope science will be able to help people with this disorder (?) I lived with amputees for 7 months and 25 days, I know all the every day struggles they go through and let alone when something else happens and they are at high risk to lose even more ( friend is 4x amputee , life is damned near impossible some days.
I like how you said you could get mad and offended, but you just feel sorry for the person. Clearly someone with BIID is struggling. It hard to imagine what they must feel like, but they're clearly very unhappy. It's good to get educated on these things and to hear your perspective as a person on the other end of the spectrum.
HI SADIE!!
Currently I’m undiagnosed, but I suspect I have BIID, or my autistic/ADHD brain is screwing me over again, it’s a 50/50. Either way, I have recently started wondering what it would be like if I was DAK amputee (right trans-femoral and left hip disarticulate), and that maybe that’s how I’m supposed to be.
Oh I would love to discuss this topic with you. One of our employees has a wife that is both a devotee and claims she has BIID. She also used to run our youtube channel until we found out the things she was posting. The are such touchy subjects though, I don't think talking about it in comments is a great idea and I also am sure you don't have time to get into a conversation about it.
My thoughts on it range from being pissed to empathetic. Same exact thing I feel when someone tells me they are trans. As for devotees. I don't see an issue with them as a whole. In any group there are nut jobs. It's just more focused on the devotee group because it's considered a fetish. Guys that like fat chicks aren't held to the same standards. They just like 'thick' women. I don't see a difference.
You said it right no worry
Okay, I'm so glad! I kept messing it up and wasn't sure if I had again!
@@FootlessJo haha it's fine
i have something like that but it... doesn't quite fit the norm for BIID. it fluctuates, and it isn't just physical things. it started with wishing to be in a wheelchair. it eventually branched out to other things. i could have multiple wishes at once and they werent always physical. i once wanted to have a leg amputated, sometimes an arm. it would also apply to things like athsma, depression, ADHD, OCD, and other things. and actually, i did turn out to have some of these... which is odd (i have athsma and i suspect i may have depression). and it's fluid. sometimes i only want to use a wheelchair, other times i will want so many things it's hard to remember them. sometimes it disappears altogether. it's fluid. it doesn't quite fit the binary for BIID, and i just don't get what's wrong with me. it's not for attention- i don't want attention. i just love the thought or feeling of being disabled. being different. -also i recently discovered that cases haven't been found in my-
-country so YAY FIRST-
Question (I'm not disabled, I'm visually impaired but I don't.... Consider that a disability cuz I can live with it as long as I have my glasses): I know that there is a way of looking at disability where... The only reason disabled people are considered disabled is because society does not accommodate them properly. If we go by that model, would this BIID be a sort of.... Dysphoria? The way transgender people sometimes have dysphoria about their body and will take medical steps to improve their living standard even though trans people are considered marginalised? (I'm transmasculine and dysphoric and these stories sound like my experience but I'm not sure if that's valid)
@Footless Jo but yet we don't touch on that BIID don't just have to do with amputation it goes even to deafness like my self I think I suffer from it cuzz I live in a loud unstable house that when im out in front around roomates I usually wear ear plugs I wish I was deaf n I speak sign language fluently n ive even gotten to the point that im starting to develop selective mutism because I don't like really talking to ppl I have bad anxiety sometimes in public but we need to start touching more in depth on things not just the surface
I am able-bodied but I like riding in wheelchairs because you can get to places while also sitting, which is cool in my opinion. I am grateful for being able-bodied but I just think that wheelchairs can be fun. I also sometimes used to pretend that I was blind or deaf so that I could be “prepared” in case it happened for real. I didn’t do any of these things because I thought I should be disabled but just out of strange interest, I suppose.
As somebody with this it mist definitely is not a choice. I literally tried to fake a fall and get hit by a train because of it. Its terrifying and causes a lot of other mental issues
I hope no one tells me that I must feel the need to be disabled. I accept there are issues with my mind and body. I just want them diagnosed so I can treat them properly and know how to handle it. It's not easy being told there's nothing wrong with you when there is something wrong
Brooke Smalls anyone struggling with this - or any disorder - deserves compassionate and informed treatment. I hope that more understanding and light is shed on this issue soon.
Speaking of similar conditions. There is some conditions that prohibit you to recognise your loved one's. You see them, you know they looks the same but you constantly feel that something is wrong, that it is not your wife but some reptiloid shapeshifter taking her form.
Very possible that sometimes a brain can not recognise parts of body like his own.
Body dysmorphia in general is something I've never personally struggled with but I have a lot of compassion for. Considering you used to be anorexic I think you probably understand better than you think, it's just a more extreme version of dysmorphia. I definitely don't love my appearance but I know it's just a mental projection of myself. To actually take that feeling out on yourself must be an awful thing to live with
Eating disorders are a fascinating connection. I've always lumped BIID with transgender because they're both a disconnect between what the body is and how that person feels their body should be. But yeah, I'm going to have to lump eating disorders in there too now because that also fits, I just never thought of it like that.
Maybe my opinion doesn't mean much as an able bodied person but I think our gut reaction of "that's really messed up" needs to be set aside to look at the bigger issue. Because YES it is messed up that an able bodied person wants to be disabled, I'm not saying it's not, but ... obviously there's something going on here for these people to truly feel like they should be disabled. No neurotypical person goes "yeah, I wanna be blind! I wanna blind myself today and just not be able to see anymore!" that's just not what healthy brains do. This is something that needs further study and needs to be taken seriously. Even if some of the cases of this disorder turn out to be people just "seeking attention" the fact that they've gone about doing *this* to get attention means something's going on with them as well, again, healthy brains don't do things like this.
I completely agree with you - that initial gut reaction may be honest and come from a place of lack of understanding, but it needs to be set aside. Because regardless of why someone feels this way, they feel that way, and its not a normal way to feel. Whatever the motivation, they need help. It doesn't matter if a small percentage are looking for "attention" or whatever (my guess is that is a fraction, but I have no statistics to back that up...like you said normal brains don't think "I want to blind myself"), even if that were they case, they still need help. I hope that more understanding and compassion and research can be directed towards those who struggle with this. It must be incredibly difficult.
I have reverse. I feel like I failed, maybe a punishment for a rough, wild life when younger? I dunno... Thanks for sharing. hugs
Lit fam
Thank you!
Footless Jo ikr epic hope for the best of you
fiecare dată trebuie să ai curaj să te ridici nu contează când ai picioare sau nu ai altceva în schimb trebuie să ai curaj cu cât ai curaj cu Atâta îi putea să mergi mult mai repede peste traumele pe care le ai avut în viață trebuie să înțelegi că trebuie să te ridici în fiecare dată cu câte litigii cu atâta vei putea ajunge la nivel cât trage varul fier care poate să ajungă în situația asta fiecare dintre noi trebuie să ajutăm pe fiecare persoana respectivă cu câte ajutăm cu atâtea se poate ridica