Good feedback, thanks for sharing.

I made a point on terminology by distinguishing impairment and disability, in line with the social model of disability as popularised by Mike Oliver. In this context, impaired is often a better term than disabled, I believe.

Disability is not merely a bodily state, as it carries a sociocultural dimension (barriers, access, stigma, identity). Impairment refers more narrowly to a bodily configuration. In BID, a person may seek an impairment without being disabled in the practical sense and, in many cases, the dysphoria itself is ipso facto disabling (restricting functioning, attention, mood, and ordinary life). From that angle, achieving the desired bodily configuration could plausibly remove the disability (the dysphoria-related functional limitation), even if it results in an impairment.

This also connects to autonomy. BID not being a choice is clear; what is problematic is how to deal with it. If we claim that the dysphoria is so strong as to cloud the individual’s judgment, there may be difficulties in supporting medical intervention, because the argument would be that, absent such distress, one would not pursue medical procedures to remove it. This would risk collapsing into a rationale akin to “I am suffering so much that I will shoot myself in order to avoid pain”, which is hardly defensible as an autonomy-based justification for irreversible action.

By contrast, if one adopts the wave paradigm so clearly explained by @johnsco21 in another post ( https://bodyintegritydysphoria.com/community/general-discussion/the-wave/#post-260 ), one can defend the idea that autonomy is better conserved when the dysphoria is at its lowest intensity (the trough of the wave), whereas decisional capacity is most pressured when the dysphoria is at its highest (the crest of the wave). On this view, the autonomy argument is strongest when decisions are formed, re-tested, and maintained over time during low-intensity periods, rather than merely endorsed at peak distress.

@leandro A lot of people are high on The Wave these days on https://bidremedy.com.   They are conducting a daily poll, and you can see from that that about half of the people who voted are on the high end.  One must realize that the dysphoria gets worse as one gets older.  Even at the low end of The Wave, one still thinks about getting what they need for their body is something they would like to achieve.  You see this talked about in the ICD-11, that the need never goes away completely. 

You cannot even imagine how happy the people who achieved are.  There are a number of them there, as there were quite a few on the older BFF group, which closed.  They are free from the dysphoria if they got what they needed. 

Yes, suffering from BID is a bitch.  The worst part is that it is so hard to safely achieve one's needs for their body.

I hear you. The decisive factor is the strength of the drive, how much the wave clouds judgement at a given moment. At the lower end, dysphoria can still be reflected on and rationalised. At the crest, it can become a no-man’s-land, where the priority is simply to make the distress stop, whatever the cost.

The outcome may be irreversible either way; the question then becomes whether it happens within a medical framework, with assessment and safeguards, or through unsafe DIY routes. The criteria, timing, and clinical thresholds are for medical colleagues to define. What we can do, however, is continue pushing for awareness, faster recognition, and timely responses because delay is what makes the situation most dangerous.

@leandro 

This is interesting. "The Wave", as @Johnsco21 points out, seems to be common within the BID population and is often discussed amongst BID forums such as this one. Yet, in academic research and debates, it is something notably absent and needs addressing. 

Although decision-making capacity in relation to the wave is prima facie pertinent, I wonder if it is something that is phenomenologically drawn out, whether BID sufferers lose some capacity when dysphoria is at its most intense. 

If it were, then seemingly the 'least risky' surgeries are for those at the bottom of the wave, rather than those at the top. Even if this is true, however, the crux of this issue, I don't think, manifests as a specific selection criterion for BID surgery (amputation, paralysis ect) candidates. Undoubtedly, given the evidential uncertainty regarding BID surgery and its irreversibility, it carries a risk that clinicians are undoubelty want to minimise and mitigate. Thus, BID surgery candidates ought/will undergo prolonged screening and evaluation to assess surgery's appropriateness. Ideally, this 'waiting period' will encompass "BID Waves" - both peaks and troughs of BID distress where the patient's decision-making capacity ought to be longitudinally assessed. Thus, clinicians ought to be aware and possibly expect BID distress to fluctuate, rather than treating temporary dysphoria remission as a reason to dequalify a BID surgery candidate. 

I suppose dyshoropia-intensity is a double-edged sword. On the one hand, it could be used to delegitimise autonomy. On the other hand, it suggests sufficient suffering for which unorthodox treatment may be justified. I partly touch upon this issue in an article I submitted, which is currently undergoing peer review (fingers crossed!). I hadn't discussed "The Wave", but a mention of it may be illuminating if/when I get a chance to revise it. 

I also wonder whether we can truly separate "BID desires" and distress from BID sufferers. If we think extreme BID distress is coercive to BID sufferers, then we must think that BID is separate from the individual, that the desires are separable, alien and infringing. But as JohnSco21 points out, and as do many BID sufferers, they see BID as identity-consituting and their dysphoria as an emotional manifestation of their unbelonging body, and not some external coercive force. If BID is self-entrenched, how can an individual be coerced by themself? This is a large philosophical question, of course, but initially it appears as a conceptual breakdown. 

@Matthew

You must understand how bad it is to suffer from BID.  The obsessive thoughts can get so bad that they can interfere with one's life.  There are things the research does not discuss, such as the pain it could cause people.  There is mental pain that is not exactly like a headache, but kind of a nagging pain.  People can also have pain in the affected limb(s); pain, or maybe tingling or some such. 

From the ICD-11 entry, you see Dr. Michael First’s description of The Wave.  He also did not know that it had a name, but described it perfectly in the ICD-11.  This is his description from the ICD-11:

“Course Features:

The typical course is for the intensity of the desire to become disabled and consequent functional impairment to wax and wane. There may be periods of time where the intensity of the desire and the accompanying dysphoria is so great that the individual can think of nothing else and may make plans or take action to become disabled. At other times, the desire to become disabled and the associated intense negative feelings abate, although at no time does it completely cease to be present.”

I got attacked on Bidremedy by someone who said he is a psychological scholar and there is no such thing as The Wave in psychology.  Well, maybe not, but it is used by the BID community.  Most people talk about how high on The Wave they are and how it affects them.  By the way, it is capitalized because it is a noun and not a verb, so it is a thing and not an action as is.   I got attacked for that, too, because it should not be capitalized.

You cannot imagine how happy people are once they achieve their needs, and yes, it is not a choice or a want but a need to have the body one needs to have.  It is similar to GD in the feeling that one's body is wrong.  You would not believe how happy people are once they get their needed body.  Even after years, they are still happy, accepting the challenges of being impaired.  The amputees love their stumps.  They are finally free from the dysphoria. 

Several people achieved, most using dry ice, on Bidremedy.  Several people did it on the older closed group Biidforfreedom.  All had no regrets and are happy.  One who got a DKD and is so excited when she got her prosthetic said she only now regrets she can no longer tap her foot to the music; of course, it was a joke, but you see how happy she is.  I say the worst part is of suffering from BID is not so much that one would be disabled if they achieve their need, but the bad part is that it is so hard to get what one needs safely.  They are being forced to DIY it, and that is not good.

The thing Is you should not say that it is only valid to give treatment when one is low on The Wave because the need is always there.  The thing is, the level of The Wave is only how much of it is being affected at the time.  It is never that at somepoint one feels they need it and other times they do not.  It is just how strong the need is that is affected by the level.  People had these feelings for most of their lives. They always felt they needed the proper body and that it was so desirable to get what they needed. 

I’ll tell you I dropped way down off The Wave about 3 years ago.  There were a few others who did as well, but very few.  I do not feel the need, and I realize at my age it would be best not to be an amputee, but I still think if I had gotten it done 20 or 30 years ago, it would have been good.  I still think it would be desirable; I just do not have the dysphoria, and I do not feel the need, but as I said, almost none of the other dropped down this low.  Being an amputee is not the worst thing in the world.

As far as knowing if someone is truly suffering from BID, any properly trained psychiatrist should be able to tell if someone can benefit from affirming surgery.  One had these thoughts for most of their lives.  They can describe how they are feeling and how it affects their lives.  Just realize it is so desirable to get what one needs.

@johnsco21 

Thanks for this. 

Is the Wave universal to all BID sufferers (as far as you are aware)? Or is BID suffering/dysphoria consistent for some?

@ mattw22 most ride The Wave, as far as I can see.  Some get stuck at the top.   That is really bad.  Just think if you are always on top with no relief.  It is so bad being at the top since it is the only thing one can think of, getting what they need for their body.  That is why some get to the Super Top, and they get depressed, some suicidal.  You just cannot imagine how bad it is to suffer from BID. One would say it is possible to be as such, why can I not be as such?   One gets envious when they see someone who has what they need.  I would not wish suffering from BID on anyone, but people need what they need.

@lefty Very good.  Yes, suffering from BID is a bitch, but as I say, the worst part of suffering from BID is not that one would be "disabled" if they achieve their need, but the fact that it is so hard to achieve one's need safely.  As I said, I would not wish BID on anyone, but if one does suffer from BID, they need to receive affirming surgery to get the body they need.  You would be amazed at how happy the ones who did get what they needed are.  The only regret they have not achieved it sooner. 

The medical community has to understand that people are being harmed by suffering from BID.  People need the body they need.  It is not a wish or even a choice, but as I said, it is a need.  It might seem crazy what we need, and we have to deal with the ableist, but the only cure is to get what one needs for their body.  We are not crazy or delusional, but we have a need.