It’s all in your head

By Anonymous, submitted 19 May 2021

I always knew I was different.

What a cliché start for an article like this, right? It’s true, though. Most neurodivergent people feel different from their peers from a young age on. A lot of us don’t find out why until much later. Either our difficulties weren’t picked up on as children, or maybe our parents didn’t want to burden us with a label. Unfortunately, this forces us to go through life with different, much more stigmatising labels than ADHD. Stupid, easily distracted, space cadet, screw-up, good-for-nothing, obtuse, disappointing, class clown, not living up to their potential,… I bet you have heard some of these too at one point in your life, dear reader.

It’s said there’s two types of ADHD kids. On the one hand, there’s the hyperactive troublemaker who either gets diagnosed as a child or is passed off from school to school until they drop out. On the other hand, you have the quiet daydreamer who flies under the radar because they don’t cause trouble and somehow get passable grades despite their doodle-filled schoolbooks. I was the second type.

I remember watching a documentary on TV as a kid once. It was about teenagers with mental health problems living in some facility. One of them, a boy just a few years older than me, tried to explain what his mind was like on camera. Suddenly, tears were rolling across my cheeks. That was the first time I’d ever heard someone else describe what my head felt like. My mother shrugged at my reaction. “If that’s what special needs kids are like, then I’d have been one, too.” Little did she know she was probably right.

I somehow dragged myself through high school, not realising I’d developed a severe depression until looking back on it years later. I was too numb to feel anything but I never tried to kill myself, so I wasn’t suicidal, right? It’s just that I wouldn’t have minded if a bus hit me one day. I could do with a few months of uninterrupted sleep, anyway. About a decade later, I would be diagnosed with C-PTSD. But let’s not spoil anything yet, shall we? We’ll keep the spoilers for the end of this article.

My mother died when I was in university. I started seeing a school therapist, and after an appropriate amount of time had passed, she asked me if I’d ever been checked for ADHD. Apparently I had been showcasing symptoms during our sessions. I shook my head, but I did note that I’d always felt like something had been off, and I agreed to be tested. My diagnose was “ADD with autistic tendencies”. This was before the publication of the DSM-V, mind you. ADD was still a thing, and a double diagnosis wasn’t.

Autistic tendencies? No, that was impossible. I had friends, few as they were, and a long-term romantic partner. I couldn’t be autistic. My GP decided that part was wrong, and I’d be best off to just ignore it.

Getting my ADHD diagnose was scary, but also a relief. I finally had an explanation for some of the things that had been haunting me! My therapy became more ADHD-focused, and I was put on medication which opened up a whole new world for me. How had I ever managed to get this far without it? I owe that therapist a debt of gratitude.

The ADHD diagnosis didn’t explain everything. What about my extreme clumsiness? My chronic pain, of which everyone was convinced it was all in my head? My social ineptitude? Why had my dissociative spells magically disappeared when I started taking stimulants? Asking a doctor was pointless. It was all stress, according to them. You know what they’re like.

Around the same time I got my ADHD diagnosis, I also met a friend who was very open about having dyspraxia. Back then I’d always heard self-diagnosis was dangerous, so I didn’t dare look into the extreme similarities between her and me at first. However, the more we got to know each other, the more I realised this went beyond mere coincidence. I talked it over with her, then with my GP who reluctantly sent me to a neurologist. It did not go well. The doctor made me jump through a series of expensive diagnostic hoops, only to conclude afterwards that I might havedyspraxia but couldn’t be diagnosed because of my age. Why he had neglected to mention that at the start, I don’t know. He was a bit of a prat, anyway. This Schrödinger’sdiagnosis frustrated me immensely, but my GP insisted it was sufficient and I should just take it for what it was.

After I graduated, I struggled to find a new GP (I’d been going to my university’s medical centre for the past years). None of the doctors I visited took my struggles seriously, and I could forget about being prescribed medication, too. How could my diagnosis possibly be accurate? I was functioning too well to have ADHD, and besides I was an adult!

This functioning didn’t last very long without the stimulants. Things fell apart soon after that. My brain fog returned in full force, along with my dissociative symptoms, and I could barely take care of myself. I don’t remember much of this part of my life. Even my wedding day is a blur. It took me almost two years to find a job after graduating, and I became financially dependent on my spouse in the meantime. Luckily my partner is an absolute angel, but I wonder how many people end up in abusive situations they can’t afford to leave at times like these. When I finally did land a job, it was in a toxic office environment I couldn’t afford to quit without a back-up plan. Burnout was soon lurking around the corner.

While all of this had been going on, I’d also been struggling with chronic pain for years. Aside of my scoliosis, which somehow had only been discovered when I was eighteen years old, nobody could explain my symptoms. It was just stress, doctors said. A lack of exercise. Sure, I was flexible, but chronic pain? At my age? Young people these days, always exaggerating.

I was too stubborn to accept this explanation, especially as my symptoms kept worsening over the years. Whenever a doctor diagnosed me with the modern-day equivalent of hysteria, which happened more times than I care to recount, I just made an appointment at a different hospital. I passed by a fair amount of white coats until one day one of them proclaimed he had found the source of my woes. All of my symptoms, including the chronic pain and hypermobile joints, were caused by me being a so-called Hyper Sensitive Person. Not exactly a scientific conclusion, but I was desperate for answers. When I looked into this, I discovered HSP is a common euphemism for hyper-empathic autism, usually given by the medical world to autistic people who don’t fit the stereotypes on which an alarmingly large group of doctors still base their diagnoses today.

The autistic community welcomed me with open arms. With the support of my new online friends, I decided to try getting a proper diagnosis, and found a psychiatric practice in a nearby town that specialised in neurodiversity. My ADHD was reconfirmed and my medication reinstated, which immediately improved my quality of life again. My ASD was also put to paper, and so was my dyspraxia. Turns out they DO diagnose adults. My old neurologist really was a prat!

Finding out I was autistic was such a relief! Finally, another piece of the puzzle! My picture wasn’t complete yet, but luckily the practice I’d gone to knew neurodiversity often co-occurs with connective tissue disorders. They sent me on my way for genetic testing, which uncovered not one but a whopping six genetic mutations. Turns out I wasn’t imagining my pain, after all. The culprit was Ehlers-Danlos Syndrome.

Along with EDS came a Postural Orthostatic Tachycardia Syndrome diagnose. Apparently I barely function without stimulants not just because of my ADHD, but also because my average blood pressure is so low it can’t even be measured half the time. The ADHD medication raises my blood pressure, keeping me from fainting. Did you know being on the constant brink of fainting can cause dissociative symptoms, dear reader? Me neither, but it sure explains a lot.

What a journey, huh? I’ve always been told my stubbornness is one of my worst qualities, but now I’m grateful for it. If I hadn’t been so stupidly stubborn from the start, I would have given up years ago and all of my issues would’ve remained untreated. I’d even go as far as to state that if ADHD had not been my first diagnosis, I wouldn’t have gotten this far anyway, even with my bullheadedness. The crippling brain fog and all that came with it would’ve stopped me.

It shouldn’t have taken me this long to find out about all of this. All of the signs where there. That quiet girl with the decent grades my teachers saw? She was so ostracised from the rest of her community, she used maladaptive daydreaming as a way of coping with trauma. She only got passable grades because she was so terrified of failing she worked herself to the bone just so she wouldn’t have to spend an extra year among her bullies. She would likely have killed herself if she had been held back at school. She also was in constant pain, but nobody noticed. Everyone has growing pains at that age, right?

All of this has left its marks, both physically and mentally. It’s given me C-PTSD, a medical phobia, an inability to judge my own experiences as all of them were constantly called into question from a young age on, and it’s left me with mobility aids I may not have needed at my age yet if only doctors hadn’t labelled me a hypochondriac.

Despite all of this, my story is not a tragedy. I consider myself fairly successful today. I have found love and community, two things that once seemed impossible. I’ve gained two master degrees, I have a job I enjoy, and I’m a published journalist who dreams of one day becoming an author, too. I’m slowly working towards recovery, and frankly I’m doing a pretty good job now that I know what I’ve got on my plate.

Yes, dear reader, you’re right. I’ve strayed from the topic of ADHD, but this was absolutely crucial for the crux of my tale. ADHD has a wide variety of comorbidities that are rarely discussed, both in the medical world and among us patients. We need to work on this.

Shall we make a bet?

I’m willing to gamble about half of the ladies reading this article are currently suffering from chronic pain, probably of unknown cause. Even more will have (C-)PTSD, likely untreated. Most of you have experienced burnouts in the past, haven’t you? Not surprising, given how almost all of you struggle with insomnia, not to mention mood disorders. What about digestive problems? Tics? Issues with math or reading, maybe? Good job on getting this far into this piece without getting distracted, by the way. I bet you’re hyperfocusing at this point. Did I spoil your concentration by pointing that out? I’m sorry, please continue. Where were we? Right, placing bets. I’m also putting my money on a lot of you being on the spectrum, even if you don’t know that about yourself yet. That HSP label you got? I’m afraid you may want to rethink that one. Hormonal imbalances wouldn’t surprise me either. I bet a small number of you, dearest readers, become suicidal during parts of your menstrual cycle, and maybe one unlucky individual even ended up in a crisis ward once after taking progesterone-based medication. That wasn’t a coincidence, you see.

All of these things are known. They’ve been studied. Not as much as I’d like, but they really have been! The information is out there. Doctors ought to know these things, especially those who specialise in neurodiversity. The fact that most of them don’t is unacceptable.

At the start of this piece, I promised I’d keep the spoilers for the end, and so I did. However, I didn’t say anything about those spoilers being about me, now did I? If parts of my tale sound eerily familiar to you, please take this as a sign. A spoiler for your future, so to speak. Look into your health issues, both mental or physical. Talk to a doctor. If they won’t listen to you, talk to another one. You have that right. Talk to as many as you can afford to, if need be. Yes, other people have it worse, but that doesn’t mean you can’t hope for something better. And no, you’re not making it up. It’s not all in your head. I promise.

I’m proud of you for getting this far. Things will get better eventually.

And here’s another little spoiler: if I can do this, then so can you.

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