Hypermobility Spectrum Disorder and Dangers of "Legitimacy"
(Note: I began writing this piece on the dangers of diagnoses and legitimacy about a year ago, and never got back to it. So the reeling phase is pretty well past! Also, early in December of 2019, the geneticist I saw diagnosed me with Hypermobile Ehlers-Danlos Syndrome. So new reeling process in progress.
I am officially certified as--no, stop it, I know what you're thinking and it's not funny, also that's ableist humor and that's bad--legit by a highly intelligent doctor with plenty of fancy degrees behind his name. But, is this really a good thing? I mean, it is for me, I know how to begin to address this thing that I have. But is our insistence and adherence on official bio-certification really a good thing? Probably not, for many reasons that I can only begin to discuss).
I'm reeling from these past few days, and really not sure how I feel about the fact that a suggestion made somewhere by someone knowledgeable for a possible diagnosis that fits really well of Ehlers-Danlos. Not only can I say point blank between my Beighton score (a measure of joint hypermobility) and joint/muscle history that I definitely fit the criteria for Hypermobility Spectrum Disorder, but that there may be an even more specific diagnosis on that spectrum that I fit the criteria for. Essentially, it will come down to whether I'm reading right the measurement how extensible my skin is, and if some of my scars match the pictures I can find online as closely as it appears they do or if any other difficult to pronounce conditions that they can test for with similar symptoms explains it better. Both Ehlers-Danlos and HSD have very similar symptoms.
Either way, hypermobility spectrum disorder, the one I know I already fit the criteria for literally explains everything, though cannot be diagnosed until all of the other possible conditions have been ruled out. All of the things going on in all of the systems of my body that seemed so disparate. For the first time there is a diagnosis that covers literally all of the things.
Maybe in a later post I can break down all these feelings I'm having because of this. Relief because really knowing what's causing the muscle issues. Sadness because it means that my small hope of gaining the ability to do a typical activity level every day is unlikely to happen. And because pretty much every form of exercise that I have loved in the past, weight training, kickboxing, and yoga may be off the table or drastically altered due to the damage it could do to my joints and body. And that does not speak to the damage they have already done while I was still pushing myself to do them despite the harm to me.
There is hopefulness because swallowing my pride tonight and putting on the discount store braces (ankle, wrist, and knee) that I bought and wearing them despite how "silly" they may have made me look allowed me to go do a fun outdoor activity involving a lot of activity and made it far less painful and kept it from bringing on the extreme stiffness, pain, and mobility issues that overdoing it can cause. And though I'm tired, I do feel like I have less of the bone-crushing fatigue (sounds like an exaggeration, and it is so much less of one than you might think) than I feel without them.
But there is danger in this relief that I feel too, in the very highly likely of having an even more publicly-considered "legit" diagnosis (either the HSD or the other thing depending on what my doctor says). There are many reasons for this.
1)I already have reasons legit enough with the diagnoses I already have to be protected under the ADA. Having a more easily understood condition that what I have now shouldn't change things, other than being able to more effectively target my treatment and adaptations.
2) This thing has always been in my body, and I deserved all the accommodations that I have now from the time that I was little. This thing has not changed in my body at all. The only thing that will have possibly changed are more targeted methods of dealing with what I have and the fact that an authority figure with a white coat finally recognizes it (to be fair to my current authority figure in a white coat, she is pretty darn cool!).
3)There are many people who are deserving of accommodations, but who are still waiting for that "legitimacy" they need from their white-coated authority. They should not be denied, simply because someone can't tell yet what they have.
There is danger in relying on authority figures validating conditions before working with people who are having difficult disability and health issues and that danger is discrimination while they wait in the gap. That danger is oppression. That danger is in being rendered unable to contribute and participate in ways that work for them and their bodies. And that is literally a sin and a crime against them.
I do feel relief now that my doctor acknowledges and is working with hypermobility as a significant condition for me. And that points right to the problem. People should get the help that they need to be able to participate and contribute even before they know why. But they often can't access the accommodations to be able to in our current culture without an official diagnosis.
And if you're sitting there asking me why I'm not addressing the possible "unfair advantage" people without biocertification (from your local nice authority figure in a white authority-filled lab coat) might gain while they're waiting for a diagnosis, I will try and put a polite smile on my face.
And then ask you spend some time engaging with your culture to see the many strange things that we normalize on a day to day basis. Why are we so damn concerned about someone getting a break, an advantage? What gains are there to that advantage? Why are the gains from that advantage so hard to come by?
And if we flipped our society economically so that those of us in the lower four fifths of the economic brackets had plenty of economic power, and reduced the schedules of everyone (whether in academia or the work world) to be more consistent with what humans can do rather than what machines can do, would we care nearly so much if someone around us got an extension on a project? Would we care as much if they earned a full salary working only 20 hours a week because that was the extent of "full time" that their body could give them?
I'm willing to bet that we wouldn't. I'm willing to bet that our individualistic tendencies have coupled very badly with our upside-down economic system that leaves us all at the bottom scrambling to individually prove ourselves to those at the top by "outworking" each other. To have to "prove our worth" and that worth being absolutely reliant in this culture on having able bodies. Or, failing the worth and dignity we should have, at the very least being able to secure accommodations with disabled bodies where the markers are visible and obvious. Failing even that, an authority whose signed statement "proves" your condition.
Why do I feel more deserving of the accommodations that I have?
Is it that my doctor acknowledges hypermobility? Or that there is something we can point to?
Why am I suddenly more worthy or legit now?
Should I be?
I am officially certified as--no, stop it, I know what you're thinking and it's not funny, also that's ableist humor and that's bad--legit by a highly intelligent doctor with plenty of fancy degrees behind his name. But, is this really a good thing? I mean, it is for me, I know how to begin to address this thing that I have. But is our insistence and adherence on official bio-certification really a good thing? Probably not, for many reasons that I can only begin to discuss).
I'm reeling from these past few days, and really not sure how I feel about the fact that a suggestion made somewhere by someone knowledgeable for a possible diagnosis that fits really well of Ehlers-Danlos. Not only can I say point blank between my Beighton score (a measure of joint hypermobility) and joint/muscle history that I definitely fit the criteria for Hypermobility Spectrum Disorder, but that there may be an even more specific diagnosis on that spectrum that I fit the criteria for. Essentially, it will come down to whether I'm reading right the measurement how extensible my skin is, and if some of my scars match the pictures I can find online as closely as it appears they do or if any other difficult to pronounce conditions that they can test for with similar symptoms explains it better. Both Ehlers-Danlos and HSD have very similar symptoms.
 |
| (If you're wondering, I can totally do this!) |
Either way, hypermobility spectrum disorder, the one I know I already fit the criteria for literally explains everything, though cannot be diagnosed until all of the other possible conditions have been ruled out. All of the things going on in all of the systems of my body that seemed so disparate. For the first time there is a diagnosis that covers literally all of the things.
Maybe in a later post I can break down all these feelings I'm having because of this. Relief because really knowing what's causing the muscle issues. Sadness because it means that my small hope of gaining the ability to do a typical activity level every day is unlikely to happen. And because pretty much every form of exercise that I have loved in the past, weight training, kickboxing, and yoga may be off the table or drastically altered due to the damage it could do to my joints and body. And that does not speak to the damage they have already done while I was still pushing myself to do them despite the harm to me.
There is hopefulness because swallowing my pride tonight and putting on the discount store braces (ankle, wrist, and knee) that I bought and wearing them despite how "silly" they may have made me look allowed me to go do a fun outdoor activity involving a lot of activity and made it far less painful and kept it from bringing on the extreme stiffness, pain, and mobility issues that overdoing it can cause. And though I'm tired, I do feel like I have less of the bone-crushing fatigue (sounds like an exaggeration, and it is so much less of one than you might think) than I feel without them.
But there is danger in this relief that I feel too, in the very highly likely of having an even more publicly-considered "legit" diagnosis (either the HSD or the other thing depending on what my doctor says). There are many reasons for this.
1)I already have reasons legit enough with the diagnoses I already have to be protected under the ADA. Having a more easily understood condition that what I have now shouldn't change things, other than being able to more effectively target my treatment and adaptations.
2) This thing has always been in my body, and I deserved all the accommodations that I have now from the time that I was little. This thing has not changed in my body at all. The only thing that will have possibly changed are more targeted methods of dealing with what I have and the fact that an authority figure with a white coat finally recognizes it (to be fair to my current authority figure in a white coat, she is pretty darn cool!).
3)There are many people who are deserving of accommodations, but who are still waiting for that "legitimacy" they need from their white-coated authority. They should not be denied, simply because someone can't tell yet what they have.
There is danger in relying on authority figures validating conditions before working with people who are having difficult disability and health issues and that danger is discrimination while they wait in the gap. That danger is oppression. That danger is in being rendered unable to contribute and participate in ways that work for them and their bodies. And that is literally a sin and a crime against them.
I do feel relief now that my doctor acknowledges and is working with hypermobility as a significant condition for me. And that points right to the problem. People should get the help that they need to be able to participate and contribute even before they know why. But they often can't access the accommodations to be able to in our current culture without an official diagnosis.
And if you're sitting there asking me why I'm not addressing the possible "unfair advantage" people without biocertification (from your local nice authority figure in a white authority-filled lab coat) might gain while they're waiting for a diagnosis, I will try and put a polite smile on my face.
And then ask you spend some time engaging with your culture to see the many strange things that we normalize on a day to day basis. Why are we so damn concerned about someone getting a break, an advantage? What gains are there to that advantage? Why are the gains from that advantage so hard to come by?
And if we flipped our society economically so that those of us in the lower four fifths of the economic brackets had plenty of economic power, and reduced the schedules of everyone (whether in academia or the work world) to be more consistent with what humans can do rather than what machines can do, would we care nearly so much if someone around us got an extension on a project? Would we care as much if they earned a full salary working only 20 hours a week because that was the extent of "full time" that their body could give them?
I'm willing to bet that we wouldn't. I'm willing to bet that our individualistic tendencies have coupled very badly with our upside-down economic system that leaves us all at the bottom scrambling to individually prove ourselves to those at the top by "outworking" each other. To have to "prove our worth" and that worth being absolutely reliant in this culture on having able bodies. Or, failing the worth and dignity we should have, at the very least being able to secure accommodations with disabled bodies where the markers are visible and obvious. Failing even that, an authority whose signed statement "proves" your condition.
Why do I feel more deserving of the accommodations that I have?
Is it that my doctor acknowledges hypermobility? Or that there is something we can point to?
Why am I suddenly more worthy or legit now?
Should I be?
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