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My Life With BIID
Written by Sean on Thursday, September 24, 2009
The following entry is an "article" I have written for an upcoming book discussing the topic of BIID. This book comes after the BIID conference that was held in Frankfurt, Germany, earlier this year. For many readers of this site, there will not be a lot of new information, but hopefully I give a good insight into the topic.
Introduction
My name is Sean. I have Body Integrity Identity Disorder (BIID). Since I was a very young child, I have needed to be paralysed from the belly-button downwards. This has caused tremendous problems in my life. I have used psychotherapy and pharmacotherapy to get rid of, or simply to attenuate, those feelings, to no avail.
The only thing that has helped me feeling some peace of mind is to use a wheelchair. Approximately a dozen years ago, I started living "full-time" – That is, I used a wheelchair in my day-to-day life, all day, every day. This has made a significant and positive change in my life. When I am in the wheelchair, I feel a sense of peace that is hard to describe. I am more relaxed. I perceive myself as more "me". Using a wheelchair is the only thing that allows me to function, but it also reminds me that I am not paralysed.
Over the years, I have advocated for recognition of BIID as a genuine condition. I have also advocated for the inclusion of "non-amputee" needs to be included in the definition/understanding of BIID. I further advocate for more research to be undertaken to better understand BIID. Finally, I support surgery as a viable option for some people who have BIID.
My Desired Impairment
I use the word "desire" in this context, but it is much more a need than anything else.
I need to be paralysed from the L1/L2 level. This means that my legs would not move, including my hips. I would not have feelings in my legs. There would be no sense of proprioception. Internal organs would also be impaired, notably the bowel, the bladder and genitalia would be dysfunctional. I am aware of a lot of other complications that might derive from having a spinal cord injury at that level. This is a case where the negative physical impact would be smaller than the positive emotional impact of finally being in the body I have needed to be in all my life.
This desire, or need, stems from a feeling of wrongness in my body. Logically, I know that my body is "normal", it is and functions the way nature intended bodies to function. But it does not feel right to me to have this functioning body. For as long as I can remember, I have felt that my working legs should not work. It is utterly uncomfortable, a bit like walking thousands of kilometres with a bit of sand in your shoes.
Of Words And Definitions
The condition currently known as Body Integrity Identity Disorder has been known under a few name, for example: Apotemnophilia or Amputee Identity Disorder. The most palatable term for me is the current one – Body Integrity Identity Disorder. It describes what is the condition well. This term is also more inclusive, unlike "Amputee Identity Disorder" – It does not limit the type of physical impairment required by individuals. And the term ‘apotemnophilia’ seem to give people a negative impression of people who have BIID just by looking at the name. It is a complicated name, obviously medical. It also implies a sexual fetish (‘philia’), which is incorrect, but also seems to be even more undesirable in our society.
I crafted and use the term "transabled", to describe someone who has BIID. This is similar to the pairing of "transsexual" and "Gender Identity Disorder". In usage, I say "I am transabled", or "I have BIID". Transabled means to me that I am in a transitional position, between a body that is not what I need it to be, and hopefully reaching that body at some point soon.
Early Life
My first memory that could be tied to BIID goes back to the age of three. We were moving and a friend of my father’s used a curtain tringle to show me how to make a brace if you sprain a foot. I do not know why he did that. I do not know why I remember that so vividly and why it made such an impact on me. When I was a few years older, maybe five, I started imagining my legs being paralysed. It just happened, I did not ask for this. It was not a happy or comfortable thing to do. It did not provide relief.
At the time, I was a bit naïve, and did not know what paralysis really was. I would be in the car and sit without moving my legs. I would perceive the paralysis starting just above the hips. I could be in the car for several hours, sitting in one position without moving at all. I did not understand "paralysis", much less the causes of paralysis.
It is at that time that I began to feel distressed by my feelings. I believed I was the only person to feel this way. I further believed that it was wrong of me to feel this way. I cannot say why I thought it was wrong to feel this way when I was that young. I just did. The older I grew, the stronger the feeling of guilt and shame became.
In my early teens, I explored the local university’s medical library. There, I read books about orthopaedics, nursing, and rehabilitation. I learned that a Spinal Cord Injury (SCI) at the 1st Lumbar vertebrae would cause the paralysis I had been needing for nearly ten years already! Just like the fact I did not ask to feel this way, I did not choose my level of disability. The need was there a long time before I knew that an L1 SCI would be the "ideal" level of injury for me.
Discovering I Was Not Alone
My late teens and early twenties were full of "adventures". I moved around a lot due to a trade relying on seasonal work, and I followed the work. During that time I acquired a wheelchair that I used a lot when I was at home, and occasionally in public.
I would drive to towns far from where I lived and work, to ensure I would not be recognised. I never was, I don’t think, but I was always conscious of the risk and worried about it. Still ashamed and guilt-ridden, I did not want people around me to know what I thought was a "sick and perverted" secret.
I sought assistance from a local community mental health clinic. After nearly 4 months of administrative delays, I was able to see someone. This therapist promptly decreed that it was a "sex" thing, that she could not help me, and gave me the name of a sexologist that might be able to help me. This sexologist was in private practice, and located 150Km of where I lived. Needless to say, that did not cut it for me. It was the first encounter I would have with mental health professionals that did more harm than good for me from a BIID perspective. But it would not be the last.
Around that time, I started searching for information about wheelchairs, paralysis, leg braces, and other similar topic on the internet. These were the "early days" of the internet, when all websites still had black lettering on grey background. There was very little information available. But I discovered I was not the only person in the world feeling the way I do. This discovery was significant for me – It was the first step in being able to shed guilt and abandon shame. "If I am not the only one," I thought, " then perhaps I am not so disturbed after all?".
I heard mostly of people who needed to be amputees. I thought we had the same condition, despite needing a different physical impairment. Our life experiences were similar. Our emotions regarding our bodies were similar. We shared common language to explain the issues. But people needing to be amputees were keen to separate themselves from those of us needing another impairment. This has changed slightly, and is continuing to improve, particularly as new evidence is coming up. I felt excluded from a group of people that experienced such a close thing as I was, and that was very difficult for me. Yet, despite that, the discovery that "I was not alone" was a huge weight lifted off my shoulders.
Going Full Time
My circumstances were such that I began to use my wheelchair all the time. I did not make a conscious effort to get to that point. Most transabled individuals needing to be paralysed dream of "going full time", and plan such a transition. For me, it just happened. I was lucky.
It is difficult to describe the relief I began to experience when I started using my wheelchair all the time. One of the positive aspects for me was that the people I knew, my colleagues, friends and acquaintances all knew me as a paralysed individual. It was good because I was able to see my ideal self, reflected in or through them. It was not a question of benefiting from attention. The need for attention is a red herring when looking for the cause(s) of BIID – It is too easy to assume transabled individuals just want attention and stop looking for other causes.
It was also good because part of the need I have is to really need the wheelchair. I want to not have the option not to use my wheelchair. When everyone "knows" I am unable to walk, then, I don’t have a realistic option of being able to walk.
Using a wheelchair full time has not cured me. I am still transabled. I still very much suffer from BIID. I am convinced that full time use of my wheelchair is the only thing that allows me to remain functional. Being able to be "myself" (even if it is a far cry from what I really need) has helped me to keep the anguish and pain of BIID at bay, just enough that I am not completely disabled by BIID.
The Extent Of Disaster
The idea of being disabled by BIID is not an exaggeration. Over the years, BIID has had different levels of impact on me. For some periods of my life, I was not affected very much by it. For other periods, I was overtaken by BIID. It seems that it has been cyclic. The older I become, the shorter the periods of respite, and the stronger the periods of BIID. In fact, I have been undergoing a "BIID Attack" that has been relentless and has lasted for more than 5 years at this point.
During the times of high intensity BIID, the need to be paralysed verges on obsessive. These thoughts invade my everyday, my every moment. Not only does it affect me when I am awake, but also during my sleep. It renders me unable to focus on simple tasks at times, even as simple as preparing dinner, or driving to work.
In fact, it is not unusual for me to feel completely incapacitated by BIID. While I am not acutely suicidal, there has not been a day in the last many years that I have not considered ending my life. My ability to cope with the amount of pain I endure because of BIID is dwindling. I continue to amaze myself with the resilience I show. Alongside the BIID, I experience intense and ongoing depression. I do not know whether depression is a symptom or result of BIID, or if they are merely co-habitating.
I am not living. I am merely surviving. My quality of life is nearly non-existent.
Of Psychotherapy and Pharmacotherapy
Until just a few years ago, I was still hoping to find a non-surgical way to handle my need to be physically disabled. Over the years, I worked with psychiatrists, psychotherapists, and various counsellors. While I had success dealing with issues unrelated to BIID, none of the people I worked with were able to show me the path to a life without BIID anguish. I came to better understand my BIID. I managed to accept that I have this condition. But I have not been able to get rid of the need to be paralysed, and I still am anguished that I am unable to get what I need.
We used several different therapy techniques. I used straight talk therapy, cognitive-behavioural therapy, psychoanalysis, and many more. To no avail.
Some of the mental health professionals I worked with suggested various medications that might help. One suggested that due to the obsessive aspect of BIID, it might be treatable like Obsessive Compulsive Disorder (OCD), and medicated me on high doses of OCD medication. It had no beneficial effect on my BIID. Other medications at various doses also had little or no effect on BIID.
One of the major issues I have encountered is that I am better educated about my own condition than the majority of mental health professionals I have sought help from. Psychiatrists and psychologists rarely had heard of BIID. When they had, often they did not understand the condition. When they had not heard of BIID, I had to explain the condition to them. Often, because the explanation came from their patient, they did not entirely believe it. Because there are not many resources available to them, they were unable to verify the information. As a result, I was mishandled and at times even mistreated.
Medical and mental health professionals can do a lot of damage to transabled individuals. I don’t believe this damage is intentional, yet it is real. Ignorance and misunderstanding leads people to make the wrong decisions, such as the therapist who washed her hands of me and referred me to a sexologist, at a time where I was in crisis. Another, more recent, anecdote involves the Clinical Director of a mental health clinic I sought assistance from. During his evaluation of me, he realised that I was using a wheelchair full time and deemed that unethical on my part. I was told that either I had to tell the "real" reason behind my use of a wheelchair to a community group I am active in, or this individual would tell them in my place. I went to this person for help, under the understanding our conversation would be confidential, yet he threatened to "out" me. Such encounters with medical practitioners are not unusual. Please note that I am not saying that all psychiatrists, psychologists or medical doctors are incompetent or bad people. That is not at all my intention. But it is important to understand that sometimes the actions of the medical professional can have a dire effect on their patients.
Of Surgery
A few years ago, I realised that it was unlikely that non-surgical solutions would not help me resolve the issues related to BIID. I accepted that the only way for me to be able to go forward was to become paralysed.
Self-injury is relatively easy if you need to be a leg amputee. Chainsaws, shotguns, dry ice, these gruesome methods will damage the leg and force amputation. But there are no "safe" and "guaranteed" way to cause a spinal cord injury. This means that for someone who needs to be paralysed, the assistance of a medical professional is essential. While there have been some surgeons willing to conduct amputations on transabled people, (whether in the open, or on the black-market) nobody agrees to do a spinal cord transection. Even medical professionals who have BIID have said that they would not do such a procedure if they were a surgeon!
I do not believe that "injury" or "surgery" is the answer for every transabled person. But for some, including myself, it very well may be the only answer. I believe that continued research is necessary to better understand Body Integrity Identity Disorder. I hope that in the future a non-invasive "solution" is found. I do not wish anyone to grow up with the pain I experienced because of BIID. I do not want anyone to have to endure this anguish year after year, for their entire life.
But I beg this of the medical community, of the ethics committees: Don’t let me suffer any longer. A cure may happen in 20 or even 10 years from now. But that will be too late for me. Don’t deny me the ONLY solution that can help me now, for a vague possibility of a better solution in the future.
Conclusion
I recently turned 40 years old, and I have suffered from Body Integrity Identity Disorder for more than 35 years. I need to be paralysed. Neither psychotherapy nor pharmacotherapy have been able to help. I am experiencing intense suffering because I am not in the body I need, and there are no avenues for me to acquire the paralysis I need. Many medical professional empathise with my situation. They all express that their hands are tied: They cannot help me. Other medical professionals not only did not help, but caused damage.
As a transabled individual, I very much feel abandoned, having to find my own way through the dark. I have been seeking that way on a difficult path for a very long time. I do not have the reserves required to go on.
I challenge the medical profession to help me, to help us, in the only way that works: Surgery. If you wish to help, that is the way.
Tags: BIID, Body Integrity Identity Disorder, Paralysis, Pharmacotherapy, Psychotherapy, Surgery, Therapy, Wheelchair
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10 Comments
2 On 24 September, 2009, Phil said:
Dear Sean, thank you very much for letting us read your article before the book comes out.
Will it be the conference proceedings book, or is it another book?
The word “transabled” which you have coined is very good. There is only one problem. I can’t find a translation into German. Not even into a technical expression with Latin parts.
We have no such concept as “ability”, but we translate disability/handicap/impairment as “Behinderung” (literally translated something like “hindered”, “constrained”, “obstructed”). When something or somebody stops you at work you say also you are/become “behindert”. So it is not easy to use the “trans-” and combine it with a word that can be used in German.
“Transabilität” sounds horrible.
What is it that is changed? Really the ability? It is the form and/or the function of the body. “Transkorporal/Transkörperlich/Transbodied” sounds like you choose another (complete) body… “Transform” already has another meaning. “Transfunktional/transfunctional” sounds too technological.
I cannot a useful word. So we have to stick to BIID (which is English; the French use “TIRIC”, I believe, so in German it would have to be “KIIS” – Körperintegritäts-Identitätsstörung).
Another thing: Maybe we should collect our experiences with therapies, describing them a bit more detailed (what kind of therapist with what kind of education and training, when, for how long, effects, cost, etc.). I hear often questions like: “Was it a real therapist with a degree?” – “How long have you tried, how many hours, weeks, …?”
I hope you come out of the dark hole already. You must have a lot of energy to write such a text.
Typo alert: this phrase
I realised that it was unlikely that non-surgical solutions would not help me resolve the issues related to BIID.
has too many negatives; the meaning as printed is unclear. It should be [likely .. would not help] or [unlikely .. would help].
4 On 25 September, 2009, Sean said:
@Phil, I am not sure which book. I think it is the proceedings one, but you would have to check.
I am sorry that the word “transabled” doesn’t translate well in German. How does the word “Transsexual” translate? In french, “disability” doesn’t really have an equivalent either, and the word “handicap” is still used, which is so offensive in English (and in French for that matter)
I like the idea of collecting information about therapy. I’ll put something together here in a bit.
@Sean: Some of my friends with disabilities do indeed find the word “handicap” offensive. Yet, others use it openly with me, clearly with no negative connotation. Care to comment?
6 On 26 September, 2009, Sean said:
@chloe I think it has a lot to do with when they acquired a disability. Dunno.
7 On 27 September, 2009, Phil said:
Hi Sean,
“transsexual” is simply “transsexuell” in German. Yet there is no equivalent for “transgender(ed)” – this word is used as an English word in German sentences.
To avoid “behindert” as an adjective (handicapped, disabled) one tends to say “Menschen mit Behinderungen” (“persons with disabilities”).
@Phil: Transabled is the perfect word. Let’s use it German too. Disabled – able-bodied – transabled = behindert – nichtbehindert – ??? Nothing would work. I can’t think of any word that suits.
@Sean: This is a great summary of your experiences. Do you have a good French word for transabled?
9 On 14 December, 2009, Phil said:
Dear Sandy,
“transabled” has this notion of ability in it. As if BIID was about being able, not able or differently able to DO something. That’s what people often think about first: What you can and what you cannot or only in another way, with a wheelchair or so.
But my BIID is about BEING myself, not only about what I do or am able to.
That’s why some just use “trans*” with a * to include all persons who cross a line, by surgery, in the way they behave, dress or define themselves.
We want a minus to get a plus. Why not say we are the “miplus” (or the “plumis”)? ;-)
Okay, let’s say transabled.
:-)
Hi Sean, thank you for sharing this story with us.
I am actually working on BIID to identify a causative gene for this devastating disorder.
Please contact me if you want to participate in our genetic study. My email is hkim at chgr.mgh.harvard.edu Thank you.
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1 On 24 September, 2009, Karen said:
Hey Sean,
this is touching. Thank you for the post. I think the most important sentence is “Don’t let me suffer any longer.” I hope this will lead to understanding.