Fully Reversing My (Claim to) Mental Illness?

Do these two Pinterest pins seem equivalent to you?

I’m going to ignore for a moment the implication by a UK PTSD charity that PTSD is “fully reversible” with CBT and EMDR. I’ve tried both, and I’m still waiting for that reversal. (Of course, given how many unique traumas the 9th Circle of Hell as dumped on my brain, including these past two months, how would I know if one ’bout’ of PTSD had ever cleared up before another re-inserted itself?!)

I want to point out, instead, the claim on the left that “PTSD is NOT a Mental Illness.”

I’d like to claim I’ve been doing something really productive with my not-FMLA. However, all I did Thursday was be kept up all night by nightmares preceding my most recent meeting with 9th Circle of Hell officials, then crash out after it and sleep for 15 hours. Apparently, my body thinks that “self-care” means hours of watching non-triggering reality television (think shows like Naked and Afraid where survivalists pit themselves against the elements or Wicked Tuna, where fishermen pit themselves against fish) and staring robotically at Pinterest at 3am when that reality television has been replaced by infomercials. My body thinks that “self-care” means not sleeping, then sleeping long enough to try and recoup six months of spoons at once after physical distress overwhelms mental distress. Would that spoons worked that way, body…

Pinterest really wants me to pin both images above. They keep showing up in my feed. I don’t have a particular problem with the image on the right. (I did read once that Healthy Place promotes some pseudo-scientific claims alongside their generally sensitive memes, though, so I’m still careful about anything they produce.) I do have a problem with the image on the left. Isn’t PTSD just mental illness resulting from self-protective mechanisms persisting so long after psychological (and physical, emotional, sexual and bullying, too!) abuse until they ultimately become maladaptive?

The definition of mental illness is a set of health conditions involving changes in emotion, thinking or behavior that cause distress and difficulties in functioning for an individual. While dissociation has occasionally been neuroprotective during the worst abuse, I haven’t found that being unable to speak while my boss yells at me as I watch the encounter from outside my body to be anything other than “distressing.” I also have yet to see how nightmares are a viable part of any coping strategy – even a maladaptive one – even during periods of active abuse. Abuse and the covering up of abuse have resulted in most-likely permanent changes to my brain that cause me significant distress and difficulties in functioning. That sounds like mental illness to me.

While I deeply hate that other people caused those changes by being abusive assholes (especially abusive assholes that have, too often, gotten away with it), I don’t see how the fact my brain changes were done to me somehow makes me superior to someone who is distressed and impaired in their functioning by endogenous Generalized Anxiety Disorder or Major Depressive Disorder. I don’t see how the fact that PTSD is, by definition, exogenous spares it from being a mental illness. The fact that advocacy groups would try so hard to suggest it does spare it gives off an unpleasant whiff of mental illness stigma. What is the purpose of going to great artistic lengths to convince others that PTSD isn’t a mental illness other than to distance it from that a thing that is somehow lesser, namely mental illness?

I don’t hate the Ehlers-Danlos Society the way I do Dysautonomia International. Unlike Dysautonomia International, their discussion of mental health and chronic illness doesn’t include damning language claiming that EDS – unlike panic attacks – are “actually real.” They even include reasonable, factual commentary that emerging evidence suggests that ADHD and ASD are more common in folks with EDS and that ongoing research to determine why the disorders might co-occur frequently could eventually help with treatments for both. Sadly, I’ve also dabbled a bit in closed Facebook groups and even in-person support groups for my diagnoses. The peer-moderated support groups aren’t as gentle. (One thing my mental illness has taught me is that unfiltered humans can easily be triggering. But, I don’t always make intelligent decisions, especially at 3am.)

I’ve noted a trend lately of people claiming that the fact that they have been recently diagnosed with EDS and/or POTS is a relief because they don’t “actually” have the ADHD (or ASD) they feared. Their relief is palpable: they have exchanged a shameful, unpleasant label for one that isn’t. Forgetfulness and fidgetiness from weak collagen? Societally acceptable! Fidgetiness and forgetfulness from ADHD? Something they were clearly still ashamed of even after ADHD diagnosis.

Now, I’m not necessarily furious at folks for feeling that way. Rejection Sensitive Dysphoria is a big deal in ADHD. We’ve heard literally thousands more negative messages growing up than those without ADHD. Those negative messages take their toll. It’s very scary to admit to having ADHD. Work protections for it aren’t as secure as they should be, and my arsehole boss has made openly derogatory claims about ADHD. He’s found lots of ways to fire people lately, and none of his victims showed detectable signs of being part of my tribe. I can’t make it that easy for him by handing him a back-channel excuse to fire me. I need money to protect my family.

I’ll even admit that I briefly debated citing the overlap in symptoms between EDS/dysautonomia and ADHD to request “ADHD” accommodations after I return from not-FMLA. I can use all the help I can get to survive in that office, especially as the 9th Circle of Hell does its best to re-traumatize me at the same time! Unfortunately, those support-group members will eventually learn that the same people who stigmatize ADHD or “mental illness” will stigmatize anything different from the social norm.

Passively permitting that trend within peer support groups only further divides the marginalized. I was reminded of that recently by my first experience of East-Coast discrimination purely over my chronic illness, not my “mental illness” or “developmental disorder.” I asked an in-person peer trauma support group if they could hold their meeting on the first floor instead of the third floor of their unairconditioned – and miserably hot – building. (This is their website-listed accommodation for mobility issues, and I requested it in advance.) I was told to climb the three flights of stairs or go away, and, when I said I couldn’t without fainting, I was subjected to a litany of cruel and insensitive comments about how unless people are in a wheelchair they aren’t “really disabled” and shouldn’t be requesting accommodations that “inconvenience” others. I was told to “come back with my medical records” if I was going to persist in my dubious request for accommodations or to just admit I didn’t need them.

Now, I can prove my medical need for accommodations, but if a group demands I do so just to provide services they supposedly welcome – especially while yelling at me as I showed the vulnerability to come to a trauma survivors’ group in the first place – they have seriously effed up! I will take my complaint all the way to the group’s supervisor, and keep going until a training is created for how to respectfully treat those with invisible disabilities. After so many years of being powerless in the 9th Circle of Hell, I will fight back in those rare instances I can. I have to, or my lack of ability to change things in the Hell I grew up in will probably eventually break me.

An arsehole will be an arsehole about EDS just as much as ADHD, and they’ll still cause trauma by calling their victim with PTSD mentally ill or “crazy” no matter what labels the community self-identifies. That’s the problem with abuse and stigma. Abusers will find reasons to abuse you even if you studiously try to refute each and every label they’ve used against you. Complex trauma is long-lasting abuse or neglect characterized by an extreme power differential with no hope of escape. That fits the 9th Circle of Hell – as well the shock waves of self-inflicted internal trauma that destroyed my family as an adjunct to the 9th Circle of Hell’s systemic abuse – perfectly. I still live the “no escape” part, so part of healing for me is not to let it go in those rare instances when I can fight back.

I might not always disclose specific diagnoses to specific people for my own safety, but I’m not looking for a way out of being “mentally ill.” I don’t blame folks in peer-support groups for trying to avoid further shame. I don’t blame those who have already been abused for trying to keep some of the most gaslighting labels (in the wrong hands) – “mentally ill” and “crazy” – from being wielded against them. I’d probably have jumped on the trend, too, in my twenties, when the weight of the shame I heaped onto myself as a result of the trauma I never asked for threatened to bury me.

I hope that I am not deluding myself when I say that I am no longer any more ashamed of having ADHD than EDS, nor do I believe that having PTSD is somehow superior to having Major Depressive Disorder or Generalized Anxiety Disorder. Yes, the anxieties that poison my brain are usually things I’ve lived through repeatedly, not fears of something new. Yes, my depression is usually triggered by the Hell that I have endured at the hands of other people. Yes, I’m socially anxious because ADHD makes me have poor social skills, and a lifetime of bullying taught me I’m too stupid to open my mouth. Those details suggest that, perhaps, my “anxiety” and “depression” do need to be treated differently in therapy than someone with other personal triggers. It’s generally a good thing to receive personalized treatment for the intensely personal experiences of mental illness. However, outside of the therapist’s office, I haven’t found it matters much whether I’m reading the post of someone who has Major Depressive Disorder or PTSD when it comes to capturing what depression feels like. Depression is rather similarly impairing no matter whether it is the capital D primary diagnosis or comorbid with something else.

If I took things to their illogical extreme, I could probably claim I have no mental illnesses at all. After all, ADHD is a “developmental disorder,” not a mental illness. (I remember a campaign a few years ago stressing that distinction, too!) If I can suddenly exclude PTSD from the umbrella of “mental illness,” then I could probably technically achieve that “full reversal” of my mental problems from the pin? I don’t have a formal diagnosis of depression or anxiety because my insurance treats them as a base part of PTSD. If the base PTSD isn’t mental illness, I could be shed of the whole label!

However, I certainly experience enough distress from PTSD – and its comorbid depression and anxiety – to feel mentally ill.

I also know that outsiders without physical or mental health challenges will keep discriminating against all of us, especially if we aid them by erecting artificial barriers among diagnoses.  I think the only way to dismantle stigma is for all of us to own the label. We need to advocate together why there is nothing lesser about being “mentally ill,” rather than continuously finding ways as subcommunities to shuck the label for our own personal situations, leaving the broader community diminished and alone. We’re stronger together.

For that reason, I’ll continue to keep “mental illness” as a category, even if PTSD advocacy ever succeeds in yanking us out from under the “mental illness” umbrella. And, I’ll still identify with the ADHD community even if it ever turns out that I show symptoms of ADHD because I have EDS, instead of alongside having EDS.

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