This is who I am, not what I have

I woke up this morning and had a small revelation: my hypermobile Ehlers-Danlos syndrome, like my autism, is not something I ‘have’ but rather something that is so much part of me that it has shaped my entire existence. If that sounds like I am just now figuring out something that should have been obvious, remember that both diagnoses are new to me – just a few years ago, I knew very little about autism and had never even heard of EDS.

Whether or not I was aware of either one, they both made me who I am today, in both good and bad ways.

The intense focus I was capable of because of my autism allowed me to switch from a dead-end job (albeit one I really loved, except for the poor pay and benefits) to a career in IT in spite of having no college education, and to rapidly amass technical certifications using only books and simulators. It took me a while to work my way into a job that was the right balance for me, but I never could have gotten there at all if it wasn’t for the Asperger’s.

Of course, on the other hand, responsibility for the isolation, (due to horrible bullying I experienced growing up) crippling social anxiety, and some truly bad situations I got myself into can also be laid at the feet of my autistic traits.

I’d pondered these things before, and meant to blog about them, but this morning I had this “aha!” moment where I realized that I could view my hEDS through the same lens. Granted, it’s harder to see any benefits or advantages it gave me…

I think maybe it allowed me to be more empathetic about disability than I might otherwise have been; my best friend in grade school was someone I bonded with when we’d both be sitting in the bleachers on the sidelines during PE class. She had really bad asthma, and I was just always chronically ill with one thing or another, including the ‘arthritis’ and ‘bursitis’ that no one ever investigated more closely.

One time when I was about seventeen, I went to the theater with some friends to see a double-feature, so we were in there a really long time. When it was time to leave, I tried to get up, and discovered that I couldn’t. My hips had just frozen up from staying so long in one position that hard seat, I guess. We had to stay in the theater until almost everyone else was gone (the people in the rest of our row having to squeeze past me in annoyance) and then I finally was able to stumble and limp out of the building. I remember being absolutely mortified with embarrassment.

Puberty was a bitch for my joints; other than the past five years or so, it was the most trouble I have ever had with my hips, shoulders, and other joints as well as other symptoms (I think it’s because during puberty, you are on a hormonal roller-coaster, and then during perimenopause, it’s like the same roller-coaster in reverse) and I can’t imagine the experience of dealing with those challenges – as well as how others saw and treated me because of it – would not have had a profound impact in forming the person I world become.

I am sure that my EDS played almost as much a part in my gravitating towards less physically-oriented intense interests – I was not just shy and awkward, but also clumsy and got hurt easily. It may have caused me to be ostracized in school, but it also led to my passion for reading and love of learning.

This month is Autism ‘awareness’ month as most people reading are well aware, and next month is EDS awareness month. In both cases, this means the dissemination of some good information, but also a barrage of negativity and calls for a cure. I think a cure for either autism or EDS, if it actually existed, would involve modifying genes before someone was even born.

What if I lived in a world where that was possible? What if there was a battery of tests that could be done some time after conception that would allow geneticists to edit the genes that would lead autism and Ehlers-Danlos syndrome? Who would I be, with those things changed? Sure, there’d be less pain and social isolation, but would I still love nature and trees and spiders, and devour books as fast as I could turn the pages? Would I have had the same best friend in seventh grade? Would I still be me?

Obviously, if it had been done before I was born, I’d have no idea what was even missing now, but let’s say someone with a time machine offered to go back in time to make those changes?

No. Fucking. Way.

I say that even though I have been on the couch all day today because I woke up with low blood pressure and my POTS is acting up and I am pretty sure I’ve got a bone out of place in my left foot because I wore shoes without inserts. And in spite of the fact that part of the reason I had an extra rough week was because I had to make several phone calls (the horror! LOL) and because my co-worker was making noises and I couldn’t think over the tapping and humming and wanted to throw a stapler at him.

This blog serves as a place for me to vent my frustrations at times, to help me get through rough patches. I wanted to write this all down while it was fresh in my mind, to have something positive to remember when I’m foggy and sore and overloaded.

I like who I am. I didn’t always feel that way, and I’ve made more than my share of mistakes, but I try to be the best person I can be, and I am finally at a point where I am comfortable in my own skin. I will do everything I can to mitigate the negative effects and unwanted symptoms that come along with my genetic makeup, but I wouldn’t take away what makes me me, even if I could.

9 thoughts on “This is who I am, not what I have

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  1. Oh, I’d give up the EDS and dysautonomia in a heart beat. (I say especially after overheating in a too-hot room during the Northeast’ s erratic weather yesterday in a public place that kept the heat on way too high.) The ADHD…ugh, I don’t know. I’m so conflicted. Even if the world perfectly accommodated it, being so forgetful and unable to remember books and convos and things even when alone sucks in a way that goes beyond society’s response and isn’t made up for by hyperfocus. But, I’m always weirded out when NTs can’t think non-linearly like the neurodiverse can. Like, maybe you need the neurodiverse to create out of the box solutions and thus I have one upside? I go back and forth depending on how my day went on whether I’d edit it so my future kids wouldn’t have ADHD, but if I could afford it, I’d totally edit out the EDS!

    Also, argh, I’m on my third PT place trying to fill my referral and none of them have heard of EDS when I call, much less know how to work with it. How did you find your place? My doctor and I are getting frustrated with the lack of experience with the ones who take my insurance…

    Liked by 2 people

    1. Yeah, the dysautonomia does suck, and I am hoping I can fix that somehow. Between the POTS episodes and the temperature regulation issues things can get pretty miserable.

      I guess I was just so relieved to finally have an answer, and have it not be something that was going to kill or completely debilitate me, you know? For most of my life, it’s been manageable, and if I could just get the bloody dysautonomia under control I think I could work with the rest.

      As far as PT places go, I lucked out because I got to see a great doctor who was really well versed on EDS and she had built up a network of surgeons, specialists, physical therapists, etc. I hate that she’s gone now but I was lucky to get in with her before she left the practice. But the PT place she sent me to wasn’t perfect and even though they were supposedly EDS-literate there were still things they had me do that I don’t think were a good idea. My right wrist is still weird.

      Is there a local EDS support group in your area? The one in the nearest city to me is really good for getting recommendations, maybe there’s something like that near you too.

      Liked by 2 people

  2. The overheating led to fainting, which somehow I forgot to mention, and awkwardly trying to explain to a store manager why I didn’t need an ambulance, but I did need them to please, for the life of God, turn down the heat! My glasses were steaming up in there!

    Liked by 2 people

    1. Oh no, I’m so sorry! That must have been really unpleasant. We’ve had weird weather too and the building heat was still on when it was 75 degrees outside two weeks ago. I ended up standing in the server room under the AC fan to cool down. They finally flipped it over to cooling, then we had a cold spell last week so now it’s freezing in my office area but I’d rather deal with that.

      I’m sorry you fainted 😦

      Liked by 2 people

      1. I think the trying to convince them not to call an ambulance or anythign but to just get me ice water and let me go someplace private to take the heavy sweater appropriate to my office, not there, was more awkward than the fainting itself. I’m just glad I DID convince them. Maybe it’s time to get a medic ID bracelet that basically says “I’m not having a heart attack, I swear, I just have dysautonomia. This happens sometimes.” Also, the lesson for me is always, always, always dress in layers. I can’t always predict when I’ll need them, one way or the other, to regulate being too hot or too cold inside.

        Liked by 1 person

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