Exploring a new diagnosis, and coping with life right now
March 21, 2023
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.
Sending love & prayers Revanche; mental health challenges + a Schrodinger’s diagnosis (you both are & aren’t ADHD until it’s official) would be a lot to deal with on it’s own, and you’re still having to paddle like crazy just to keep your head above water re: chores and kids and life.
Thank you! I’m trying to take it one or two steps at a time. 🤞
Good luck with everything!
I also have real trouble with names and sometimes nouns. Dr. Google recommends B-Complex vitamins and in my uneducated non-scientific opinion I think it works for me? In that when I’m having trouble and I take a B-Complex it seems to help?
Thank you!
How funny, I wonder that the connection is. I do take a multivitamin that includes B-complex, I wonder if maybe it’s insufficient.
Big fluffy hugs and thank you for sharing. You may well give someone some nudges like Abby gave you. Since we can’t climb into others’ brains to see the world their way, it’s no surprise that diagnoses can be late breaking. I hope there’s continued relief and learning for you.
Thank you! I do hope that maybe sharing can be helpful to someone else like Abby’s was to me. And I hope folks continue to share with others too, I’m always trying to learn a little more.
Just wanted to say that I’m so glad you’re getting the help you need. Or starting to get a tiny fraction of it. And also to say, I struggled with depression (and anxiety – though I also did not realize my way of interacting with the world was actually anxiety) all throughout my teens and 20s, and I tried so many SSRIs during that time. Some helped at first, then stopped. Some never helped at all. It wasn’t until I finally got diagnosed with ADHD and started medicating that, that I felt better. I’ve been on ADHD med for 10 years and they have improved my quality of life so much. I’m so mad I didn’t start them sooner. All that to say, I’m so glad depression meds are helping a bit, and I really hope that you eventually find that ADHD meds help a lot. Sending hugs from near by in the Bay! I hope you’re weathering this crazy storm okay.
Thank you! It feels like a very strange journey I’ve embarked on now. We’re slowly uncovering things I’ve been doing all this time and seeing some or part of the patterns behind them. And I’m so glad for you, too, that your diagnosis and meds are working well now!
Are you only on ADHD meds now? I do wonder whether I’d maybe switch from one med to another or if I’d possibly do a combination. Purely speculation at this point of course 😁
I hope you and your family and home made it through safely!
It’s interesting isn’t it how we can hear about someting so many times so many ways but don’t really connect to it.
There is so much talk about ADHD these days, especially among women now, which is such a great thing. (I know I’m a highly sensitive person, some ADHD traits resonate but not all, I am positive my child has it to some degree.) And thanks for introducing a new concept to me – off to read about rejection sensitive dysphoria (RSD).
I was reflecting on how that happens with so MANY things, we have to hear it at the right time or the right number of times for it to really sink in.
RSD: it’s weirdly helpful to put a name to something that can wreck my whole day or more when it makes absolutely no sense.
(I paused the video I was watching to concentrate on reading this post 🙂 ADHD be gone, I need to concentrate!)
Gosh, very happy your anti-depressants are making life more bearable for you – what an awesome, brave step you’ve taken already!
Oh it is so complicated, isn’t it? What causes what, and how is it connected, and all that. It doesn’t help that a lot of the classic ADHD symptoms, like RSD, are actual independent diagnoses on their own, and ADHD can present in so many different ways. But it sounds like you & your doctor team are carefully sorting through the morass to get you to a better place, whether or not ADHD is a part of the mix or not. I am glad you have such great doctors who are identifying & treating the layers one by one, and have good friends that can advise you and help you recognize patterns that have become second nature.
I identify with a lot of what you are describing. Oh, the stomachaches! The not talking! The strict life management systems that make me seem super organised and type A and anal and inflexible but are actually delicate, fragile houses of cards carefully set up in a Rube goldberg machine of coping mechanisms…one tiny breeze or mistake and it all crumbles and the ball goes off track, stops up a toilet, and results in a flood and a fire (somehow). at least, that is the way it feels, and I can’t let many people know (esp my boss!!), lest they think less of me or don’t believe me (which has happened).
what is crazy is that i wonder if the anxiety may actually be a (misguided) part of yourself trying to help you?? ADHD makes it so that we can’t get much done unless it feels life or death/super urgent/important, thus triggering the dopamine rush needed to get ALL THE THINGS done. In that case, your anxiety actually puts you in that state so that you are getting more stuff done, avoiding criticism from other people by getting things done well, etc. People tell me how extremely capable and reliable I am – but the truth is that I subconsciously and consciously *CREATE* stressful situations, scenarios, and putting tons of pressure on myself to get myself to do what I need to do, plus more so no one knows how difficult everything is for me. I had no idea I was even doing it until the past few years. It comes at a very high cost to *constantly* be in that state, though. Burn out city!
I teared up when reading about young you feeling so anxious, and older you being kind of embarrassed of a new diagnosis. It’s just so sad to think of all the suffering caused by society placing such a stigma on mental health issues. (And if we could recognize and treat symptoms in kids how much better off would we all be?!) I am still super careful about who I tell – I also feel slightly embarrassed of my diagnosis when telling others – but personally, internally, it has been a HUGE weight lifted. There is a reason I do what I do! That has helped immensely in recognizing well-meaning but ultimately unhelpful patterns of behavior. It is great when you get to that place, because then you have good ammunition to use against the super critical voices in your head.
Well, this could turn into a book of anecdotes where I describe parallels to what you’ve described here, but I won’t do that to you. I will just wish you all the best as you untangle all of this, and applaud you for being brave enough to both look in the dark places yourself and allow others to look in order to help you. That must have been really hard!!
I don’t mind a book! Thank you for sharing, I really appreciate it 🙂 It’s definitely very complicated and I am so grateful to have met people who were willing to share their own experiences in these tricky and sometimes deeply personal issues.
Nothing useful to say, just warm wishes that things continue to improve. No one deserves to feel the way you describe.
Thanks so much, Rae. I really appreciate the support <3
Through parenting Baguette, I have learned a lot about myself. I definitely have autistic tendencies, but I don’t think I am autistic. Over the past year, though, I have gotten to the point where I am pretty sure I do have ADHD. However, I have read that one of the things you have to be able to demonstrate for an adult diagnosis is significant impact before the age of 12, and . . . I can’t demonstrate that. Which is common. Because many of us had parents who helped us cope and compensate. And also because I am a long way past 12. It’s been a bunch of decades, and I don’t have enough details.
What I’m doing, at least for now, is kind of leaning into it. I’m letting myself hyperfocus when that’s the direction things are heading; I’m going on momentum when I can identify a working sequence of tasks (even if they’re not heading toward a single goal); I stop and take breaks when I run out of focus and energy. It’s probably not a long-term approach, but it’s getting me through the now.
Anxiety I’m also pretty sure about, but I don’t have a diagnosis for that, either.
My autistic friends are split, some think I am and some think I’m not, so it’ll be interesting to see what the final assessment says. I suspect the diagnostic path isn’t clear cut though, I hadn’t seen that requirement of demonstrating impact before 12. How would you even do that as an adult? Also I’ve spent my whole life masking for so many things, I’m not sure if I know what I truly feel if unmasked.
I have been doing the same as you for years. When I have the focus for certain tasks, I do them, and when I don’t, I work on the easy automatic stuff. And when I run out of the easy stuff, I have to force myself to focus on the things I’ve avoided.
I haven’t medicated for anxiety but being aware of it has helped me learn some mitigation tactics!
Jedi hugs coming at you, friend, if you want them.
Hoping that things will continue to improve. I’ve honestly wondered HOW you keep standing up to All of the Things.
Thanks, Donna, always appreciated!
I have seen some small but real improvements so far and I’m really grateful for that much!