Hi, my name is Filip .... , I usually use the nickname Pavel85, age 40, male, I live in the Czech Republic.
I have lived with BIID my whole life, I don't remember much about my childhood - it was a difficult time, my parents divorced, I grew up only with my mother who wasn't very strong in social relationships, I went through various psychotherapies to suppress ADHD throughout my childhood (I only have partial ADHD, although maybe it's not ADHD but it was always just BIID), I never talked much about the real problem because it was a strongly taboo topic, so I remember the experiences from that time very vaguely (even as a child I admired people with casts or prostheses), the first strong manifestations of disharmony in me could have occurred sometime around 12 years old, then they grew straight away, at that time I underwent one therapy after another for attention deficit disorder - I was still in my own world. Sometime around the age of 16/17 I started to actively address my incongruity, however it was the time of the beginning of the internet, information was zero, so I was classified as apotemnophilia (I partly believed it) and that was the end of it all, I went through a few therapies, CBT, mirror therapy without any meaning... however, by the age of 16-18 I understood my problem very precisely, but everything could still be managed with conventional means (crutches, orthoses, it brought relief for a sufficiently long period, help from doctors was always zero and uninterested), while studying at university, unbearable manifestations of BIID incongruity began to manifest themselves due to excessive stress, at that time I started to actively use orthoses for a long time, and simulation - however, even at that time it was very stressful, fear of being discovered, fear that someone would understand that it was only "like" at that time I would rate BIID at level 4-5 with a wave of 6-7-8/10 after There was a longer period at school that could be managed with the use of a simulation orthosis, the condition was stable for a long time, but everything gradually got worse, the simulation helped only for a limited time and always after the end and when confronted with reality, sadness and an extremely bad mood came. The fundamental and final deterioration came around 2018 (at the age of about 32), I no longer had the strength to simulate, nor did the conditions allow it, so I only wore the orthosis, at home, outside and to sleep, I had, I know now, a very nice idea that it could be managed that way, everything gradually got worse until during Covid I fell into severe chronic stress which developed into a chronic disease. Since 2018, I have been noticing that I am at the 7/8 wave 10/10 level, I practically cannot get below it, it affects me every day, every hour of my life, I cannot work - go to work (I have never been an employee in my life), I work only as an independent person (which fortunately provides me with sufficient financial security, but as is often the case, money cannot buy happiness), during the 10/10 wave I am not even able to communicate properly, I am only in my head, in my world. For the last 8 years, I have been gradually developing chronic insomnia - the last 3 years I have had attacks of night anxiety, my sleep is extremely poor quality, the long-term average of all sleepy periods per day is around 6 hours, higher numbers are exceptional ... even though I develop relaxation techniques, unfortunately my "cricket in my head" wakes me up and won't let go ... sleeping pills - I don't want to take medication, I love my body very much for that. In fact, I don't see even the medications for BIID (i.e., more commonly used for depression, anxiety, etc.) as a solution. My body is my sanctuary and I don't want to destroy it with chemicals. Of the ones I've had the chance to try (most recently, Atarax, for example), they either don't work for me or they work for me in such a way that I'm depressed to the point that I can't even function... my wife tells me that I'm like a "vegetable" - that's an allusion to Ruby from the movie "Shut up!"... I can simply overdo it with a weak dose, a strong one turns me off... nothing in between has ever succeeded in suppressing BIID, it has always only suppressed me as a person...
The negative effects of chronic stress and the accompanying illness, which is triggered practically only by BIID, are slowly being brought under control and stabilized, but even so, every morning it's always hard to find a reason to get out of bed and without a long-term solution, everything starts to get worse again.
I'm a little envious of people who have a bottom of the wave at level 0-1... I've never actually in all those years I have never experienced a moment when I would have peace inside and it would not really affect every day, for a long time I managed to push it through "workaholism" ... that doesn't work anymore today.
For many years I was in various forums as a silent participant in the shadows, today my situation is slowly changing, and I no longer have the stigma of talking about the problem ...
My perception has been completely consistent for 25 years with absolutely no significant change - left leg, disarticulation in the knee, no patella ...
There is still a lot to say but for such a short introduction ... 😀
Good, you found your way here and gave your story of how BID affects you and your life. People here need to tell how the BID affects them. Yes, BID is very hard to deal with. Just realize that neither drugs nor therapy works to alleviate one's BID needs. You should stop taking the drugs since they will not help you and they are causing your problems. Therapy does not work either.
As you should know by now, BID is neurological; related to how one's brain is wired. Needing to be an amputee in your case is not a choice, but a need to be as such. The only way to alleviate the dysphoria is to get what you need for your body. The problem is it is just so hard to get there safely, and that is one thing this group is trying to do: educate the medical community on how people suffer with BID. There is no solution except for one to get what they need. Neither drugs nor therapy will help. This is the thing. The medical community needs to recognize our needs and provide affirming surgery.
Thanks for the message, yes you are definitely right. I am currently without medication - I do not take any, I just write that I have tried many /last time last fall/ and nothing really helps, as you write therapies do not ... lately I have been thinking about whether to at least try to get a diagnosis on paper, but unfortunately that is not possible in our country either ... ICD11 is not used, so no one wants to deal with it.
The worst thing about all of this is that a person is somehow "caught" in life by their age - 15 years ago I knew a GK and I could have solved the whole thing (and it was a mistake that I didn't solve it), but I was young and I didn't have the money for it, today it's exactly the opposite, there is more than enough money for solutions, but there is no GK anywhere, not even a recommendation, "semi-legal" methods seem to me that due to globalization and the Internet, they are all slowly disappearing... I would like to help research BID, and it would be great if doctors understood the everyday suffering, but on the other hand there must be will and interest, I think that BID is so extremely rare that the "medical business" will never have the real effort and will to be interested in it and solve the problem (from a purely economic point of view, a sick consumer is better for medicine than a healthy cured one, and a large group of patients is more interesting for research - than a few hundred to a few thousand around the world - no one will pay attention to that in terms of money, and unfortunately most medicine today is like that "It's better to solve a problem - than to finally solve it" works... as I wrote above, chronic stress is already cumulatively starting to cause other illnesses in me (sleep, metabolism, chronic pain), which I'm managing to manage so far, but doctors don't admit the relationship of BID to other chronic illnesses, medicine has no interest in healing a person, that's how I feel after 25 years.
/Sorry, ma english in not good, google help me sometimes/
Welcome, @pavel85. Thank you for sharing your story, and I’m glad you found your way here.
As you may know, the BodyIntegrityDysphoria.com project operates under Corpus Sui, a non-profit organisation based in Prague. BID remains heavily unrepresented in the Czech Republic, although we are actively working to change that. At present, Dr Loriga is the main and only reference point locally engaged with this issue.
If you have not already done so, feel free to complete the anonymous survey to help us map the situation more accurately:
https://bodyintegritydysphoria.com/bid-demographics-survey/
Live aggregated results are available here:
https://bodyintegritydysphoria.com/bid-live-data/
Kind regards,
The BodyIntegrityDysphoria.com Team
Advocating for bodily autonomy, patient dignity, and the right to self-governance in life and beyond.
www.bodyintegritydysphoria.com
info@bodyintegritydysphoria.com
Hi,
thanks for the message, yes you are right, in Czech BID is completely out of all medical interest. I have heard about Dr. Loriga but I am not in contact with him, I have read some works by him, however I do not know if he is still active in CZ and whether he currently has any project "in progress" on BID, I do not know if he would be interested in any diagnostics, research or cooperation with him, I would be very happy to participate - I would be very interested ... and if it were possible to get some BID assessment / diagnosis from him for me (for example, that my diagnosis corresponds to the signs of the future diagnosis 6C21) I would also be happy, however I do not know exactly how I can possibly contact him .... I do not know what language Dr. Loriga speaks, I assume that it is probably not Czech, but my wife speaks very good English, she can act as an interpreter / translator for me.
Welcome.
Thank you for your introduction. The simple fact is that BID does not disappear. Even if you think you are giving yourself a break in what you do — work, family, and everything else — BID is still always present in the background. Sometimes more, sometimes less. Sometimes it breaks through. It’s not that you stop functioning, but you become very weak and exhausted, simply because that’s how it is. BID is challenging.
Fakt ist: BID verschwindet nicht. Selbst wenn Sie glauben, sich eine Auszeit zu gönnen – sei es im Beruf, in der Familie oder in anderen Bereichen –, ist BID im Hintergrund immer präsent. Mal stärker, mal schwächer. Manchmal bricht es durch. Sie sind zwar nicht völlig funktionsunfähig, fühlen sich aber sehr schwach und erschöpft, einfach weil es so ist. BID ist eine Herausforderung.
My experience is that I have to adapt more and more to my BID because it is simply the lesser evil and the better option for me. As you said, for example through assistive devices — sometimes even day and night. By now, this has become normal for me, and I live my life with the daily full use of my assistive devices. Even that is not really enough and remains an attempt that has been ongoing for years.
It’s good that you decided to participate in the research. It is important. Until proper treatments are approved, unfortunately, a lot more time will be needed. --- My opinion.
