Im Ada from Michigan in the US. I found this forum after coming across the book about the ethics surrounding BiD. Its been a while since Ive been active in any BiD community, but its nice to see some familiar names.
I repressed a lot of things growing up, particularly being trans and having BiD. I realized i was trans roughly six years ago, and realized the BiD three years ago affecting my left eye and left arm above elbow. The BiD realization came at a rough time in my life, and ended up being kind of catastrophic - leading to a period of many hospitalizations, and failed attempts on my eye and arm. After my eye attempt i started wearing an eye-patch full time, and similarly after my arm attempt i stopped using that arm completely - this being my last hospitalization. During this time I pursued any treatment path offered to me, most classes of psychiatric medicine, many forms of therapy, an appointment with John Hopkins, interactions with neurology and even an encounter with PT and OT. Of the therapeutic approaches Ive tried I found Acceptance and Commitment Therapy from a psychologist who specializes in pain to be the most agreeable, though this was after i had stopped using my arm. Said Psychologist did agree to write a letter for my psychiatrist advocating for surgery (amputation of the arm and total tarsorrhaphy of the eye). This psychiatrist did consider writing a referral but was worried about potential legal and ethical ramifications, which after failed attempts to connect with the ethics team of a nearby major hospital he decided against making the referral. Eventually my treatment under that psychiatrist ended with him saying that he had ran out of ideas for treatments, and that i should look into surgery in a country with fewer ethical barriers, advice i did not follow. After this i was not receiving any treatment for a while. I was out of work after my last hospitalization as my job had quietly fired me for being away to long, and I was struggling to find a job that I could do one handed. Eventually I got on to Disability with the stated reason being BiD and ADHD. Its been two years since I got on Disability. I have connected with another psychiatrist, but they have been unable to offer any treatment for BiD.
I attribute most of my stability after my last hospitalization to the ending of use of my eye and arm. I still experience dysphoria of course, but its manageable, even if i entertain the thought of another attempt on occasion. At this point I am fully settled into life without the use of my arm and eye. At this point I do not consider this as "pretending" since my goal is not to simulate being an amputee, but rather to manage symptoms by avoiding interacting with or bringing attention to the offending body parts. If I were to pick a single word to describe it, I would choose "adaption". This adaption is not a perfect solution - I avoid exercise to not trigger dysphoria, and because of constant eye-patch use i notice my left eye shows some concerning symptoms on the rare occasions I check on it. because of this and the remaining dysphoria I still believe surgery to be my best option, so long as risk of severe long term pain is not too high.
Yes, therapy does not help relieve the dysphoria of BID. The best that can be done is to allow one to accept that they have this need. As you see, the only solution is to get the surgery you need. People who have achieved are very happy and accept the challenges of being "disabled." There are also many Trans people in the BID community. You should join this group: https://bidremedy.com/ , as it is very active and has ideas on how to DIY. BID is so hard to deal with the only solution is hard to get. You also, as you see, cannot suppress the feeling; it only makes it worse. You are not crazy, but have a need.
Hi @ada welcome to the forum and thanks for sharing your story.
Leandro Loriga, Ph.D.
Medical Anthropology · Bioethics · AI Ethics
Anthropological and bioethical consulting for public institutions, healthcare organisations, and research initiatives.
Philosophical practice and ethical consultation.
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leandroloriga.com
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Esse et non esse possunt identificari
Reflections on Adaptation with BID (Body Integrity Dysphoria)
Dear Ada,
how wonderful that you've found your way here and had the courage to share your story. One word stood out to me profoundly: adaptation.
Adaptation is a process many people must undergo — after an accident, a serious illness, or a major life change. But for those affected by BID, this path is especially difficult, because our surroundings often respond to this reality with misunderstanding and a lack of empathy.
Whether in medical, professional, family, or social settings — treatment is often denied, and the very nature of our being is called into question. It feels as if we have to break through a wall — not one made of concrete or steel, but something far harder: societal rejection, ignorance, and prejudice.
This isn't about wanting to stand out — it's simply about being allowed to live in peace with oneself. That’s not a luxury; it's a fundamental need. Constant negative feedback from outside only fuels the internal dysphoria and makes it harder to find any kind of stability.
So many with BID are left with no choice but to search for our own way forward. Personal adaptation — however it may look — becomes a survival strategy. Not because we chose it, but because there was no other option. BID is just there. Uninvited. Without a solution.
And yet, there is quiet strength in this adaptation. A hope that one day, we might become a little more whole with ourselves. Even if that path may seem foreign to others — it is deeply human.
Warm regards
