Heavy Subject Matter (Pt. 1: Mentally Heavy)

CW: This title was meant to be humorous, but what I wrote initially didn’t end up humorous. The title became both a play on words and not one simultaneously. I did what I did the last time I tried to write about one thing but ended up writing about another. I split the post. The parts where I reference things going on with a family member may not be suitable for those who are vulnerable in their mental health to read at this time. Feel free to skip this post if necessary. There is a Pt. 2 that reflects the more banal slice of life to follow. I’ve mentioned before that I am experienced at living with the dichotomies, so both parts of the post are simultaneously true. I’m both having a rough time and still myself, you know? I still struggle one night and go to Improv another. It’s how I (mostly) maintain my mental health. I don’t apologize for that self-care. (I don’t. The bully-in-my-brain doesn’t technically apologize for the humor part. Just for the rough part. A$$hole.)

But, this week has been rough. The immediate issues are still my work and getting over a “flu-like illness”, as I have described here and here. But, there’s another issue, too, and it relates to the general guilt I’ve been feeling. Guilt – rational or not – is not an awesome add-on for PTSD. On top of that, I heard through the grapevine that “the meeting” coincided with a couple of heads rolling. They were not on my project team/directly working on my job type, or I’d probably be too anxious to even attempt to write blog posts to sort out my headspace. However, their abrupt departure still ups the stakes for any future mistakes.

On the one hand, we seem to remain collectively a valuable team dealing with a rough time in an organization during a time of upstream confusion that affects our new direction. As a girl who reads the room like her mental health depends on it, I’m honestly not totally shocked by who left. There were hindsight warning signs. On the other hand, if there’s a guillotine, it’s not unreasonable to assume there will be a line up to it. The strategic thing to do would be to be even better than usual. The mental thing to do would be to self-sabotage because of the anxiety and cumulative triggers I’m writing about below. I go into freeze/”swimming through molasses” mode. I read the politics. Then I make myself more vulnerable to them by becoming a mental mess exactly because I know everyone is watching. This is both why I work so hard to maintain the non-anxiety elements of my life for grounding, and also why I end up writing about guilt after horrible sleep due to nightmares and the associated guilt of missing something I didn’t really have to go to anyway.

So, I have recently been diagnosed with Ehlers-Danlos Syndrome. I have been formally diagnosed for over a year with a hodgepodge of dysautonomias, e.g. POTS and orthostatic hypotension. I have ADHD. I have all of these things, yet I’m by no means the most in need of TLC within my family’s genetics. I am also the caregiver for someone who is non-verbal, has a developmental disability, and has epilepsy. I’ve semi-jokingly referred to myself as the lab rat for that someone for most of my life. When the genetic die was cast, I ended up like what seems to be the norm for generations of my family. Wired, tired, and probably in pain, but basically “passable” (and on a good day, I’ll allow, maybe even good at what they do.) Another wasn’t so lucky, and what humanity decided to do about their not-at-all-invisible conditions lingers to this day. It lingers in the big ways – in abuse – and it lingers in the “small” ways like medical discrimination.

I faced resistance and push-back obtaining all of my diagnoses. I basically had to diagnosis myself first, then force doctors to confirm those things using established medical criteria. It wasn’t easy, but it worked. For the EDS diagnosis, specifically, I partially got doctors’ attention by mentioning a family history of those who have it worse. Worse like, oh, dislocating shoulders bi-monthly while growing up, yet having orthopedic surgeons dismiss it. Worse like, oh, having – so far as I can tell – the dysautonomia physiological swings come along with flare-ups of the neuralgia and seizures, too. Worse, like, oh, having the out-of-whack blood levels lead to ER visits and hospitalizations that, each time, we’ve had to fight to have treated as “medical” not “psychiatric.” Why?

Why, you ask? Because a non-verbal person with a developmental disability is always assumed to just “be that way.” Because everything is a “behavior.” Because a criminal amount of medical professionals still seem to forget that verbal skills aren’t a requirement to feel pain. Because I learned to read medical journal articles from dozens of fields – even learned what dysautonomia and EDS were for the first time – because I was looking for answers for someone else. I’m only the lab rat. What I have is supposed to be a clue to how to help someone else. So if I – the girl who subluxes but goes to work anyway – can get these diagnoses, then surely doctors would take a gander that maybe that other person has it too? At least attempt a Beighton, even though admittedly even I find it hard to do, too, with someone who doesn’t understand why I’m trying and resists for fear of potential pain?

After all, EDS is genetic. After all, one of the dang diagnostic criteria is the presence of a similar history in family members. After all, facts are supposed to matter, aren’t they? (Spoiler alert: they don’t.) I’ve been telling folks until I’m blue in the face for the past month that I was recently diagnosed. Doctors still say there’s probably an underlying psychiatric cause to the “behaviors” – and all the rest of it is probably a side effect of the meds. Besides, they say, even if there is something else, what could be done? It’s not like someone like “that” can handle PT. It’s not even like physical therapists will try. Chronic illness is not a “medical” emergency; it’s “routine care.” Practitioners don’t have to accept patients until they make it to the ER. (Even then, there are loopholes.)

The Ehlers-Danlos Society actually seems vaguely knowledgeable. I have a blog reach (ish). I’m hoping on the one hand that maybe by some miracle someone in the EDS community will know a specialist who is used to working with EDS in non-traditional populations. My family – back when we were still whole in more ways then total membership and I was very young – sought dozens of opinions. On the one hand, no kindly miracle doctor ever smoothed a path for us. On the other hand, I wasn’t yet a lab rat. I wasn’t yet able to read medical journals. Maybe somewhere, outside the 9th Circle of Hell, with the breadcrumbs of my medical history to follow, there’s somewhere to go? Maybe…

But until then, I feel guilty for seeking out PT for myself. Until then, I feel guilty for seeking out other jobs in other states that maybe, someday, could be better to seek services in. And, I feel even guiltier when things seem to be precarious at that job (not that long after I got it if the comparison is the time it takes for the wheels of bureaucracy to turn.) I fear that if I ever lose that job, I’ll have failed first because I left “home” (not that it has ever felt like one) to look for another way and then again because I failed to find one after I got there. If I can’t provide that better way, then doesn’t it just prove I’ve been that selfish asshole – as others have drilled into my head for as long as I can remember – after all?

I need to maintain my mental health. It’s kind of an unfortunate unofficial requirement at American workplaces, where branded stress balls are given out as office gifts, but mental health “care” is a joke. I need to be even better now because our company is being affected by some of those ridiculous upstream effects of the joke that is healthcare policy in the U.S., but I feel guilty because the pressure is getting to me. I feel guilty because the fear that I will fail is making it more likely that I will, and then what?

Then what? Then, I decide maybe it’s time that I seek out that trauma yoga that my therapist has been mentioning for a while. Because, oddly, in addition to maybe helping with the mental health, the leader has actually heard of EDS, and apparently even knows how to modify yoga for it. Because my therapist arranged it to where I didn’t have to recount my “trauma” again as a price of admission, so I don’t have to risk that someone will tell me that the only reason things still seem so hard is because I’m an asshole who doesn’t care enough, not because the bad things really do happen. I don’t have to risk someone telling me I don’t deserve to claim PTSD when I’m the one who keeps failing others. How could I be affected by the things that happen to others? And, really, what do the other trauma fault lines in my own life matter when they rumble if they are a branch off of the much bigger San Andreas?

I decide to go to trauma yoga, and I fail at that, too. I thought I was getting better. I thought the fact that it was modified, gentle yoga focused as much on mental wellness as physical activity and could be modified for those recovering from injury or illness meant it was worth a try. Heck, I was told I didn’t even have to participate the first time. I could just watch. I figured that given I did nothing but read last night and practice good self-care, this would be a viable extension. Except…

Except the book was 1,200 pages in hardback and my wrists are weak. Reading made them hurt enough to want to wear my new braces because I didn’t think it through. Except that I was up all night with bad dreams and am feeling a ton of anxiety this morning. Except that I am so tired…

I wrote and said I’ll try again in two weeks. (I have another commitment next weekend.) That’s allowed. That’s supposed to be okay. I’m not sure if I’m anxious because I “failed” yet another commitment today, or because self-care – especially anything modified for EDS – makes me feel guilty since someone else doesn’t seem to deserve any. I can’t tell why I get worse in my mental health when I know I need to get better, or why my brain seems bound and determined to make me prove to myself I deserve even to modify yoga for EDS. Why does it tell me self-care is selfish? How does that help, when doctors seem to care so little I might, effectively, be the only one someone else has access to? Why, when I only have letters after my name that, while useful, but do not spell MD, am I the only one trying to get a diagnosis for someone else in the first place?

Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.


10 thoughts on “Heavy Subject Matter (Pt. 1: Mentally Heavy)

  1. Well written and expressed. I certainly feel the frustration and can relate to it. I want to send gentle hugs your way and a nod of encouragement to keep working your stuff, even when the stuff in your head stinks.

    Liked by 1 person

  2. Thanks for sharing your story! I know the times that I’ve tried yoga, it does get easier over time. However, if you’re also dealing with various medical conditions and have weak wrists, then it might be better to try something else. 🙂 I’ve also found in my own case that physical health does impact my mental health. Exercise is good, but overdoing it and hurting oneself is not recommended. Best of luck!

    Liked by 1 person

  3. Just a thought… In my history, I’ve been the “other person” who didn’t count witnessing someone with similar issues receive excellent care. I didn’t resent the person who received attention, nor did I think they were selfish. I feel grateful someone is getting help, even if it can’t be me. It’s not your fault the universe opened this door and shut five others. Or whichever way the math works out on any given day.

    Yay for accepting what gifts life has for you, no matter how big or small. Your inner five-year-old expects fairness and is confused by the ruthlessness of politics, but that’s because she’s new. The more experienced, more rational part of you still feels her feelings, even if they don’t make logical sense, and it can leave lingering effects like guilt that doesn’t really belong.

    I don’t detect an ounce of selfishness in you. If there were a frivolous game where being selfish was the only means of winning, you’d suck at it because it doesn’t make sense to you, and you’d probably refuse to ever play (again) because it conflicts with your you-ness. Does not compute. In case I botched that, you’re fantastic and I’m glad. 💜

    Liked by 1 person

    1. Thank you. A LOT. Things are kind of falling apart (again) medically with said person and – because fuck this country and every policy maker in it – three medical crises in two months that have lead to hospital admissions for PHYSICAL health reasons have been labeled “psychiatric” by the group home provider. And apparently in the 9th Circle of Hell I have no real meaningful legal recourse to challenge that, but in my new state that I moved to to get AWAY from that Hell I STILL can’t jump the waiting list even in crisis. And, now we’re supposed to find a new place within thirty days, but the only place taking openings is one that we CAUGHT abusing their charges before. The same asshole regulators that allow evicting a person with a pervasive developmental disorder for “psychiatric” reasons even though there is no place to GO also allow places with abuse histories to stay open.

      And all the while I fight like Hell to get proper pain management and sensory environments and all the things that WOULD help because it helps me (and I share 50% of genetics.)

      It doesn’t work, because Hell is other people, yet I feel like it’s all my fault anyway when I fail. If I were just BETTER somehow…

      But, no. Fuck this country. I’m exhausted, soul sick, morally injured by our society for permitting literally yesterday this new thing and frightened to the depths of my being. And, because money buys privilege, I will get up and go to work to keep my job and write humorous things on my blog this week to try to claw my mental helps back from the depths of PTSD to handle this current crisis.

      I’m rambling now, I know, but basically gist is: you’re right. The adult me knows the current crisis is the result of such systemic institutional abuse in this asswipe of a country that one person alone can’t hope to change it. The me who lived her own types of pervasive developmental trauma thinks she deserved this because she’s selfish and will probably become what she fears from within her own family. She thinks facts should MATTER because she’s a scientist with C-PTSD, but if facts mattered it wouldn’t be TRAUMA. It helps to a) have someone else even believe this kind of shit happens. I’ve been told on a seemingly perpetual loop throughout my life by sanctimonious others that such things DON’T really happen and thus it MUST be because I failed and b) that you’ve not only been there but don’t think I’m selfish.

      I’m not in a good spot right now. I’ll never do anything about it. Part of how I ended up a caregiver at a young age drilled THAT into me, and I would feel like I’m selfish if I ever listened to what my brain sometimes thinks is the only way out. But, having such a rough time right now means all the kind words from people who get it help so so much…

      Liked by 1 person

  4. A fair amount of the EDS community is on the mailing list my mother (a nurse with EDS) follows so that she can answer questions. If you want, I’ll ask her which list it is? Often, if someone is looking for a doctor, asking on list will stir names up for your location.

    I’m sorry you’re dealing with EDS on top of the struggles life has handed you. 😦


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