A Life of Misdiagnoses

I do not know if it is something about me in particular which causes health professionals to often be so offhand with me; if it is perhaps something peculiar to my autism; or something that happens to nearly everyone (female or male).

This recent journey of an autism (self)-diagnosis has yet again highlighted how many health professionals seem to not only believe that I know less than them about the way I am physically feeling, but that what I believe or feel is secondary to what they think is probable. Even if, as with the case of Dr. C, they met me five minutes ago. He is definitely not alone.

I am genuinely interested in my own physical and mental health, and believe I probably should pay attention to what is happening in my own body. That doesn’t sound too unreasonable to me.Unfortunately, a lifetime of somewhat spotty self-awareness hasn’t always helped my own diagnoses, but that’s a whole other issue.

Someone recently posted on a Facebook group I am in how health professionals often seem threatened when you come to an appointment actually informed about your condition. On reflection, it has certainly been the case in my experience. You also risk getting labelled a hypochondriac. Or anxious, paranoid and hysterical at the very least. So, like a stereotypical science geek claiming to be ignorant to make people comfortable, I have pretended to know less than I do. (The other side of this information-coin has been, on occasion, actually not knowing the answers to basic questions asked about myself until hours or even years later. Admittedly this is likely less of a problem for NT’s / those with more self-awareness than I). If the medical professionals are in the habit of losing your medical records (who knew it could even be a habit), it becomes even more problematic, because you don’t even know what they don’t know.

I always found it very hard to assert myself to my doctors. Necessity changed this gradually over time. Increasing health problems, having children of my own to ‘protect’ and exposure to more and more quite obvious mistakes made by caregivers lead me to view health professionals’ diagnoses with a certain reserve, if not scepticism until proven otherwise.

What isn’t acceptable is the overt arrogance with which these ‘diagnoses’, if you could even call them that, are often conducted. I had a very wise if cynical female health professional tell me how in medical school all the doctors were treated like gods and so all expected to be worshipped forever after. (And that it was such a male establishment that females had to ‘prove’ themselves twice as much, often to the detriment of any of their compassion). She often challenged them and was therefore deliberately ‘snubbed’.

Whether this is always the case or not, I have had doctors bully me, ridicule me, patronise me, argue with me about the date when something happened (I had to pull out a calendar. Looking back, it was almost a form of gaslighting). I had one doctor perform a procedure after I repeatedly said ‘No’. (No means no, right?). I would say some of these behaviours were actually abusive and it would or should not be stood for in any relationship, and therefore definitely not the doctor-patient one.

I’m not saying all doctors are arrogant, but it does seem to be a common thread. I’m also not saying that I have never met a doctor I didn’t like & respect. Yes, they may have some awesome responsibilities but that doesn’t make them a god, or give them unlimited power over my own body. Yes, they may be deserving of respect, but they are not automatically entitled to it. As an old cliche goes, respect must be earned. And it also should go both ways. Care in no way has to equal domination. Why would that even equate?

Many people seem to be justifiably angry about their treatment in different physical and mental health areas of care.I have heard horror stories of treatment from so many people, and far worse than my own. Some are ridiculous and comical, some are incredibly traumatic if not life-threatening. The problem is that they are not rare events, but almost commonplace. For some people, at least.

I can laugh about this latest episode, but perhaps not if the consequences had been more serious. I myself haven’t been wrongly committed after a misdiagnosis, for example. I understand mistakes are made and that sometimes any professional would be powerless in such an imperfect world, where the technology or knowledge available can not always help. The assumption that we should know little about our own care, or certainly less than our caregiver, is something that I am finding more and more difficult to accept or downplay.

Still, I find the highlight here, however, is not the dismissive nature of my most recent misdiagnosis. The fact is that it was a trusted health professional who pointed me down the path of an autism self-diagnosis. I may not have been diagnosed or recognised as autistic until I was 38 years old, but someone did see it, even if nobody previously did, & it has been a tremendous relief through the upheaval to have an explanation for so much, after so long.

No, I’m not borderline

Or, the infamous meeting with Dr. C. 

Today has been surreal.

I had my first psychiatrist appointment today with Dr. C. Despite aiming to leave a half hour early, I was 15 minutes late, which didn’t bode well. I was still able to sit around in the waiting room long enough to both calm down and start getting anxious again.

I think it was a bit of a bust. I went in there and knew the odds were against me for a diagnosis, but it was pretty comical really. I have another appointment scheduled, but I’m not sure whether to give him another chance (!) or to just cancel now. That’s me being positive.

The thing that probably most stuck out was him asking me ‘Do you feel you dress provocatively?’.

This question will probably haunt me for the rest of my days. Flashback to earlier this morning: I’m rummaging in the clean clothes basket, throwing tops on and off. The day is warming up & I hate being hot. My boobs feel like they are busting out of my top and I get a safety pin and pin my clothing so my cleavage is a bit more ‘decent’. I forego a dress because I don’t want to look like I’m going to a party. I wear an above-the-knee skirt. I feel presentable and not overdone and only mildly uncomfortable. This all takes a while & is half the reason I’m late, but as much as I want to make a good first impression (what is this, a job interview?), I don’t care that much.

The memory of all this runs through my head in a fraction of a second. It’s a bit of a blur but I believe I answer in the negative, then proceed to tell him the saga of my top and the safety pin and my overheating problems and how I find it hard to find tops that fit my boobs (I grabbed my boobs for emphasis at least once here).

So, with this auspicious near-beginning, at which point he could either think ‘classic ADD / Asperger’s rambling inappropriately to explain herself in great detail’ or what I actually believe he thought ‘aha, she doth protest too much….’, I answer a whole lot of seemingly random background questions. They appear overly focused on my sexual activity as a young adult (non-existent btw), when not querying any impulsive and/or addictive behaviours, and my relationships with family.

There’s a bit of silence and I’m rocking on my chair (it has sliders).

Dr C. tells me that it looks like I have a problem with coping with stress (we can agree on this). And that every time I have a ‘breakdown’, it seems to be related to relationship breakdowns or changes (coincidental at best). That I appear to have dependency issues (I don’t think that’s the root of my problem here, Doc). And he’d like me to think about that until our next appointment.

He then he tells me to continue on with my current meds dosage (I’m actually coming off them), and to see him in two months.

I nod and smile because I am trying to be polite. I would like to disagree with something he says but Dr C. is trying to get me to leave. I am then being ushered out the door while trying to get a word in edgewise. In a rush I garble “What about my psychologist has said I have Asperger’s?” (Or Similarly Good English).

“No, I don’t think so. It’s highly unlikely”, he says.

And that’s all he says about that. The entire reason for my referral. And I have a copy of that letter here. It’s very short. One paragraph. Actually, one sentence. “She may have ADHD and/or Asperger’s”.

I can see that he must have taken that very seriously.

After driving home, wondering what on earth had gone on in that appointment exactly, there were all these things that jumped out  at me.

Impulsive. Mood swings. Addictions. Provocative.

I’ve been doing a lot of reading in my ‘research’ lately, for my self-diagnosis. Something in my eternally-trivia-collecting brain connected the dots and I magically Googled and found the article I’d read recently: http://aspertypical.com/2014/02/05/the-borderline-of-aspergers-revisited/

I believe that was what felt so ‘off’ about the appointment. I had joined the ranks of those female Autistics misdiagnosed by a professional, who most likely didn’t even believe in adult female autism! Dr. C had apparently diagnosed me with Borderline Personality Disorder perhaps before he’d even met me!

I have no real ‘evidence’ to base this on. No more, really, than any mis-diagnosis of his would have been based on. As I said, though, I am considering giving him another chance….