Anxiety: A Memoir, or How Living With a Mental Illness Sucks

For a long time now I've been wanting to write this post. It's been rattling around for months now, as an idea, and as something I feel almost compelled to share before I can even think of writing other posts. But I haven't until now because, honestly, writing has felt so hard, and this subject is so scary. It's a real baring of my most intimate life and insecurities, and there's always the terror of  not knowing how people will react.

But now it's mental health awareness week in the US. It isn't here in Canada: our mental health awareness week is in May, apparently. But seeing posts about mental illness starting this week from various networks of mine, it felt like a sign, or perhaps more just the final push I needed.

I have a (or more than one) anxiety disorder. As for what precisely in that category of various anxiety based disorders I live with, who knows. I think generalized anxiety disorder sounds most accurate, my GP thinks panic disorder and maybe obsessive compulsive disorder. I haven't sought the official diagnosis of a psychiatric professional for some very good reasons that I don't want to get into here. And really, I don't particularly care. I only care that I can say "I have an anxiety disorder" because it can help me find people who understand, and because I really hope that people will take me seriously (though with how shitty people dealing with mental illness are often treated, I'm probably hoping in vain). I'm not just kind of stressed, or worried, or what have you. I'm anxious. All the time.

I've been making a conscious effort in the past year to be more open about my anxiety, but I find myself easily slipping into talking about it in a colder, more detached way, or simply in a super brief and non-explanatory way. I have an anxiety disorder. I deal with a lot of anxiety. It's not actually that hard to say that. What's hard is talking about what that actually means in my life.

I've struggled with anxiety for most of my life. As a small child, I can remember holding my pee for hours when I was out, because I desperately didn't want to use the public toilet. When I eventually did, if any part of myself, my clothing, or my bag so much as brushed any part of the toilet (or perhaps even worse, the sanitary napkin disposal box), I would just shut down. Any further enjoyment I might have gotten out of the day was ruined, and I'd barely interact with anyone after that if I could help it. Because internally it was all about that moment of contact in the bathroom, paying attention to everything that that contaminated part of my skirt then touched: side of hand, purse, knee. So that I could make sure that I washed everything that was contaminated once I got home. When other children would come over to visit, I'd hang around near the bathroom door when they used it, to make sure I heard them wash their hands (and would go to my mother panicking if I didn't hear those taps go on).

As you're probably starting to realize, anxiety around cleanliness has always been a big thing with me. Health, too, relatedly (those "signs of a heart attack everyone should know!" things that go around the internet are really hard for me, as hearing about horrible diseases/illnesses I might have often leads to my having to spend several hours or more talking myself through my anxiety, and convincing myself I'm almost certainly not dying of something awful). And really, when it comes to cleanliness related anxiety, I've gotten a whole lot better. I learned, over the years, how to cope a lot better, and there are plenty of things that no longer bother me at all. There are still lots of things I do on a daily basis, lots of habits, that keep my anxiety about cleanliness specifically at bay, but the only time I have major meltdowns or shutdowns about it are when I'm already struggling: almost always when I'm away from home (the place I get to have control over, minimizing triggering things), tired, in a new or especially stressful environment. When those breakdowns do happen, it can be discouraging realizing I maybe haven't come as far as I'd thought I had, but I try to focus instead on how very much progress I have made.

Which is really part of the reason this past year has been so difficult. I stopped writing so much on this blog because, as I said about a year ago, unschooling and alternative/radical education is no longer something I feel as passionately about. Or, more accurately, I'm just not interested enough in it any longer to focus as much time on the subject as I had been. But I didn't mean to drop this blog as completely as I did. That happening has more to do with how much my mental health went down the toilet last winter, and has stayed at pretty much toilet levels since then.

It confused me, at first, because my primary relationship to anxiety has always been through the specific areas of cleanliness and health, yet my anxiety around those things has been at fairly steady levels for years. That didn't really get worse. But the constant fairly low-ish levels of anxiety I was used to living with started going up. And when the anxiety you constantly. Feel. All. The. Time. Gets to a certain point, you start to no longer be able to deal with even the smallest stressors, and even getting out of bed, getting dressed, and leaving the house start to be really, really hard. Anxiety has always made those things more difficult for me than for plenty of other people, it's seemed, but this seemed to be new levels of difficult, or at least more difficult than I'd experienced in years.

Physical health problems I'd dealt with in small ways for years started getting worse and worse, until I finally realized that it wasn't normal to constantly feel weak, to wake up never feeling rested, for my shoulders to be constantly knotted in lines of tension, for my heart to regularly race, to feel dizzy, shaky, and short of breath every single day. The multiple headaches (some mixture of tension and migraine headaches) a week I've been experiencing for years started to feel harder and harder to deal with. I didn't know what was wrong with me, physically, because I never imagined mental illness could have such a huge physical effect.

When I was a teenager, I'd sometimes get panic attacks. For those who've never gotten one before, it's a feeling of absolute terror, like you're dying. My heart would race, I couldn't breath, I'd have hot and cold sweats, shake violently, and yet with all of that also feel the strangest sense of detachment (which I quickly learned was known as "disassociation"), as if I was removed from my body. My previous experience with panic attacks made it confusing for me now, as I wasn't having full-blown attacks so felt my anxiety couldn't be *that* bad, even if the fear of having one still came regularly with a racing heartbeat, lying in bed in those hours between 2 and 4 am, when everything is too still and all your fears can find you. But because I could talk myself down enough for the panic to not get that bad, I felt my anxiety couldn't be all that bad, right?

Until a scary and embarrassing 911 call, made when my hands cramped up so badly from hyperventilating that I couldn't move them at all. That, and seeing a doctor, something terrifying and difficult and a decision made when the terror of not knowing what was going on with my body outweighed the terror of seeing a new doctor, made me realize that I'd literally been hyperventilating daily, for weeks, and just been unaware of it. Tingling hands, shortness of breath, dizziness? Just a regular fixture of everyday life, and also likely what's known as limited symptom attacks.

It was hard to realize that most of the health problems I've been dealing with are almost certainly anxiety related. And it has been difficult, yet also felt very important and healing, to finally, finally stop minimizing and dismissing my struggles. After years of going it's not so bad. Other people have it worse. I mean, I'm not *really* ill. Years of missed opportunities and meltdowns and regrets all because of anxiety. To finally be honest with myself, and say: this is a problem, I'm sick, and neither ignoring it nor putting myself down for it is helpful or healthy.

And about a month after making that conscious decision, I am doing a little bit better. I'm hyperventilating a lot less, and getting better at stopping the panic faster. I've tried out some meds to help reduce the amount of headaches I get. I feel like recognizing I have an illness and realizing I need to make conscious, deliberate steps to improve my health has been a bit of a turning point, and I'm doing better. Not good, but better.

And now I find myself turning outwards, not being solely focused on internal struggles, but also wanting to communicate my struggles, explain to people what's going on. Which is scary, not the least of which because people often react in really unhelpful ways. Without knowing about my illness, people have been saying hurtful things for years. As I wrote in a Facebook note about a year ago, my first time publicly talking about my anxiety:

people say the most hurtful shit to me, without having the faintest clue how hurtful it is. People crack jokes about me being a clean freak, tell me I should have a clipboard/respond with a “yes boss”/otherwise imply I’m being unreasonable and bossy, and similarly make an issue of my saying “that’s not clean” or “please wash your hands” or “please don’t put that on the table.” Which makes me feel really bad, to the point that sometimes I feel like bursting into tears (though luckily I generally manage not to). I feel really self-conscious about how others see me and my anxiety, and the best possible reaction is for people to at the very least act like they don’t find anything I’m doing, or politely requesting that they do, odd. I don’t want people to notice my anxiety, and I REALLY don’t want to be mocked for it. My family can make jokes about it without it being hurtful, but unless you know me well enough to feel you have a really good idea of whether I’ll be hurt by your joke or not, you shouldn't make it.

It's easy for people to make such comments in ignorance, because if I don't tell people about my anxiety, they don't know. I'm good at hiding it. Seeing as I've struggled with it since I was 6 or 7, you could say I have a lot of practice. I've carried on conversations with people while hyperventilating, my hands shaking heart racing, and they can't tell anything is wrong at all.

But even when I tell people, even when they do know, people say the most insensitive things. Become Buddhist! Try meditating! Just take deep breaths! Don't worry! All of which, to someone who's been constantly anxious for almost as long as they can remember, can feel like a slap in the face. Thank you, it never occurred to me to just take deep breaths. And offering meditation alone as a "cure" feels to me like handing a bandaid to someone with blood gushing from their slashed femoral artery and saying that will make it all better! 

I'm not saying that religion or meditation or mantras or many other things can't help people deal with their anxiety, because it can, but for someone without anxiety to think they can solve someone else's extremely difficult struggle with a perky suggestion of a lifestyle change, as if it was that easy, feels more insulting and hurtful than anything else.

Now as I come to the end of this post, I'm trying to feel out what the purpose of writing this is. And it's that I'm trying to be more open about this struggle, because hiding it makes me feel worse, not better. Because I hope that by sharing this struggle, as someone whom apparently other people admire, I hope people carrying stigmas about those with mental illness can examine any prejudices they might hold. And because I know how very, very helpful it has been for me to know I'm not alone in these experiences, and I hope that other people can know that too.

I'll be okay. I have supportive people in my life, and I don't want any of you kind people to worry. I just wanted, as always, to share.