March 21, 2023

Exploring a new diagnosis, and coping with life right now

This is a confusing and complex sort of thing. This may be something that was a long time coming, or not. We don’t know yet.

In the middle of the pandemic, it felt like a collective discovery was happening as a striking number of folks were joining the ADHD club. With the loss of their systems in a world gone topsy turvy, they came to realize they’d been compensating for ADHD all their lives. Their coping mechanisms had masked it until everything fell apart.

Rewind further back past this trio of hell years was my personal slow discovery of anxiety and depression, and how they feature prominently in my life alongside my chronic pain and fatigue. The awareness of depression came first, acutely, suicidally, and faded in time.

But the anxiety! Gosh, the anxiety was probably my companion since I was in kindergarten and I simply never knew what it was. A good friend, Sarah, has both autism and ADHD and stunned me when she shared this tidbit: “There’s a saying that a child with anxiety doesn’t say “I have anxiety” they say like “my stomach hurts” because that’s what they know. ADHD and gastro issues are often related.” That describes me to a T. My memories of my earliest years were: avoiding socializing or talking at all, getting sent to ESL because I wouldn’t speak, and having a stomachache every single morning. For years I blamed them on eating breakfast. Now, I think that it was anxiety eating me up inside.

Yet I was 35 years old before it occurred to me that these had anything to do with anxiety: edginess, tightness in my chest, difficulty breathing normally, impending doom. It took years of friends talking about their anxiety to spot the similarities.

I’m a slow learner.

When I was 18, I experienced severe chest pains and my coworker told me that I was having a panic attack. I didn’t know what to do with that information. We didn’t really have Dr. Google back then. What is a panic attack? Why would I be panicking? What’s there to panic about? (Other than working full time to pay for my college tuition, the $6000 a month in monthly bills at home, the $1000+ a month in debts incurred over the years as my parents eked out a living from their business while supporting family, and my dad keeping most of it together with cons and Scotch tape? What indeed? /sarcasm)

All of these bits cascaded together like tiny bits of sleet, glacially slowly, until Abby’s post made me ask myself questions that I’d missed for a long time. When I did, and when I realized I had checked an awful lot of boxes, my first reaction was: I didn’t want to be diagnosed. I was kind of embarrassed, to be honest. I don’t want to be “more broken”.

But talking through it with Sarah and other friends who are on the spectrum and/or have experience with ADHD helped immensely, and helped me start to see how the puzzle parts of my history might fit. I have been forcing myself to mask and manage all this time, punishing myself for being lazy and/or incompetent. Insisting that I had to force myself through with willpower and grit.

The scattered brain feeling, being easily upset/emotionally on edge, hypoactivity that I’d assumed was chronic fatigue. I avoid making certain commitments for fear of not finishing them. I take on too much, daily. I can’t remember names unless they’re dogs’ names. Hypersensitivity to criticism…woof, yes. More on that below. I force organizational systems on my life specifically because I’m not good at staying organized. I can’t listen to someone at work talk for a minute without zoning out. But it’s not because my brain is busy with other thoughts, many times it just feels empty.

Sarah shared the following thoughts, among a lot of other really useful thoughts, during our chats:

“I can always tell when I’m overstimulated because everything and everything is literally the worst and I can’t handle it” (This accurately describes my six months before March.)

“When answering questions be conscious that you’re not masking when answering. “does x cause you trouble” it’s hard but try not to be like “Well no not really I manage every day-” you probably shouldn’t have to “manage” to do something.” (Sometimes I don’t even realize I’m masking! It’s just that I’m so used to coping, it’s become second nature.)

“There’s zero benefit to agonizing over something inconsequential or something you can’t personally change all day and yet…!” (On bad days when I screw up something and my RSD kicks in something fierce, it feels like trying to move boulders to move my focus)

So many of these things rang too true for me.

Related, around this time I watched Douglas on Netflix. Hannah Gadsby’s bit about the dog park had me in stitches. One part down to her delivery, two parts down to recognizing that same tendency to misread social cues. Of course, she was referring to an autistic characteristic but the incident itself made perfect sense to me. I’ve got at least three embarrassing memories of fixating on entirely the wrong detail in a conversation and walk away from them concluding I really should never speak to people again, it’s for the best.

Finally I bit the bullet and emailed my doctor who promptly sent a referral and the Psych department immediately set up an appointment for me.

That was both startling and appreciated. My consult, however, did not go as anticipated. They had me fill out the anxiety and depression scales ahead of the appointment and it turns out that I scored too high on both to be evaluated for ADHD yet. That was quite the surprise to me. In hindsight, it shouldn’t have been. In many of my therapy sessions over the past year, I’ve been struggling with how overwhelmed I feel, how angry I feel, how much I’m numb to joy and unable to appreciate the small moments of good. At some point you’d think it would have occurred to me that perhaps I was able to connect as an involved parent in the years after JB was born because I was on antidepressants. This time around, I didn’t go back on the meds immediately after Smol Acrobat was born. I’m trying to cope through COVID, having two young kids, a full time job, a partnership that gets very little time, constantly feeding everyone, and wondering why I’m always irritated and prickly.

Like I said. Slow learner!

One problem is I’m a very high functioning depressed person. I get a hell of a lot done even while feeling worthless or hopeless or angry at the whole world. My survival skills are strong. I still worked as normal when I was feeling suicidal because dead or alive I had (have) obligations and I won’t stop for anything. That’s less of a commentary on my workaholism and more on how we live in a capitalist hellscape where even planning my own death ten years ago, I was also equally concerned about leaving enough money to cover the bills.

Anyway. During that appointment, we agreed that I’d go “address the depression and anxiety” and then come back for an evaluation for the ADHD later. I had a ponder, talked to some friends, and decided to try medication again. I’d used it before to treat chronic pain but as an antidepressant that worked for my pain and PPD, the odds were good that it would work again for the depression.

The first three weeks on the antidepressant was agony. Everything resulted in the weight of the galaxy landing on my shoulders. I felt anxiety ramped up to 11 over everything. Every tiny difficult thing threatened to send me down a terrible spiral. One weekend was consumed with passive (suicidal) ideation. I was walking on mental eggshells for weeks. But I hung on. 8 weeks after starting them, I am feeling the benefits.

My mental health on the antidepressant is much improved. I start my days with a much lower level of rage than had become normal. I feel less like Sisyphus emotionally. It’s even mildly reduced, by just a touch, the physical fatigue that weighs me down so dramatically. For the first time in years, I’m feeling mild interest in doing fun things. I’m not actually doing them yet, logistics are still way too much effort, but I haven’t felt “hey I want to do that” in a real way since the pandemic started. That shut down with COVID and stayed shut tight with depression.

A certain amount of anxiety remains, which isn’t a surprise. My inability to remember names is still a huge frustration. It took me an hour and a lot of mental flailing to remember Nicole Cliff’s name, for example. I loved her on Twitter but could not for the life of me remember her name. I am still feeling what seems to fit rejection sensitive dysphoria (RSD) pretty intensely and have to work hard at avoiding that spiraling.

A fun new problem, maybe related, maybe not: severe orthostatic intolerance – my world spins wildly when I stand up, or my BP drops precipitously, or both. I have come near to blacking out several times.

It might be time to reschedule that ADHD assessment. Maybe in a couple weeks.