Monday, October 7, 2013

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.


  1. Glad to hear that you're doing a bit better lately, hope things just continue to improve. I've never been officially diagnosed, but I have some serious anxiety issues, mostly to do with interacting with other people. Social anxiety is something the majority of people seem to have no understanding of, but it can be debilitating, and makes everyday life pretty miserable. This is just to say, I can somewhat relate, and kudos to you for posting this. Definitely helpful to have more recognition of these kind of issues.

  2. It feels like kismet that I started following your blog a couple of months ago when searching for unschooling blogs. Recently I was diagnosed with an anxiety disorder and depression and good god, how I can relate to much of what you have written here. Like you, it's something that has been a part of my life since I was a little girl. (I'm 42 now.) Thank you for putting this out there. It's really quite brave of you to share so much of yourself, of your struggle and it hit home with me. I hope you continue to do well and am very happy you have supportive people in your life. It gives me hope for myself!!

  3. Wow! I command you for writing about this. I have suffered from an anxiety disorder for as long as I can remember and relate to so much of what you are saying here. It really flared when I was your age (between 20 and 22 for me) as well as the migraines/tension headaches, to the point where it led me to a severe state of depression (living with a constant level of anxiety, panic attacks, hyperventilation and all the rest of it made my body crash into depression mode). I had done all I could at that point (lots of therapy, all the natural therapies I could find - my mom was quite the crunchy type - visualization and meditation - I agree with your bandaid analogy)... and decided to go see a psychiatrist and try some meds. It took lots of trial and error, but when we finally found the right ones for me, my life changed. Gone were the constant feeling of fear, the lingering anxiety, the panic attacks. I felt so very free. Since then, I tried to come off the meds to see what happens and I get right back to this paralyzing state... Finally, after crashing really hard two years ago, I made peace with the fact that my biochemistry is just off and that I do not want to ruin anymore of my life because of this terrible plague. It is not me, it is not even part of me (as I used to think).

    Anyways, I totally respect your decision to not got see a M.D., but I just wanted to share my story. There is still a lot of taboo about medication. We need to talk about anxiety and depression, but we also have to stop feeling like we are weak if we need to take some medication to have our brain work like other people's brain. It is not a matter of lacking will or controling the anxiety...

    I wish you to find the right answer for you and I hope you will feel free from the grasp of that terrible disease one day.

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  5. I also suffer from anxiety (and depression) and see the same in my kids. I was wondering -- is the fact that you would have to defend your being unschooled one of the reasons for avoiding therapy? I ask because I am unschooling my kids and am having trouble finding help that doesn't include "kids need structure or they will have anxiety" -- even a homeopath said that!

  6. I am a worrier myself (It's normal to experience different emotions in life) and after reading this blog post I realised that my child had anxieties too.

    When my son went to mainstream school he became depressed, anxious - he felt broken, and we decided to take him out of the "system". We went to Summerhill School (which is in England, UK). Now he is a happy 9 y.o. kid and a completely different person, he has his moments (which I consider to be natural ups and downs), but in general he is a content human being, enjoying his life, having fun with his friends and knowing how to deal, solve life problems and how to hack rules he can't overcome.

    This school is like a remedy, natural environment, very human, very therapeutical and I can see how many other kids transform into confident, strong and powerful humans.

    When I think about it, I am sure, I couldn't give him as much power and strenght all by myself, kids need the right environment to grow into the content and fearless adults.

    I wish other people to find their ways to overcome and hack different problems, depression and anxiety. I know it might sound as stupid as meditaion, but have you tried running? For me it is the best workout for the brain and mental health.

    All the best,
    Natalja :)

  7. Thank you for sharing your story. I don't have an anxiety disorder myself, by I see my 19-year-old daughter struggling, and your words remind me that anxiety is a huge part of her struggles - something we need to deal with more effectively, so that her other struggles will be that little bit easier.

    Have you read Jenny Lawson's "Let's Pretend This Never Happened"? She also suffers from anxiety, in her case, paralyzing social anxiety. In her blog (The Bloggess) and in her book, she manages to bring out some of her "crazy" stories, and shine the light of humour on them. Laughter is always good!

  8. I was agoraphobic for many years as a young adult. I would not go out of the house for days on end, and when I went to a place like the supermarket I wore dark glasses the entire time I was in there, and hurried back home afterward to recover from the terrible feeling of being out in the world, exposed and raw and vulnerable. I sought remedies through meditation (unhelpful), reading (useful but didn't get me out of the house), and a very kind and gentle spiritual adviser who helped me alter my perspective a bit at a time. It took many years for me to work through my own social anxiety. All of which is to say you are not alone, and you are loved and respected, and I know it's hard, and thank you for writing about it.

  9. I love your writing, and your willingness to share your thoughts and struggles! It does take courage to write about these things, but I hope you'll be glad you did. Telling your story is sure to help those who have felt similar, to realize that they too can tell their stories if they so choose. And it helps those of us who have friends or family with anxiety issues or OCD to hear about your experiences, too - so we can understand better what it can be like.

    I have been interested in OCD and other neurological/psychological issues for a long time, perhaps in part because I have "face blindness" myself, which has made social interactions tricky for me. Anyway, some books that I love, and that you might like, are Devil In the Details, Just Checking, and Kissing Doorknobs. The first two are nonfiction, the third is fiction. All are both serious and funny at points, like life is.

    I very much hope that you'll find strategies and/or medications that will help you with the anxiety. You have a wonderful writing voice, and such an interesting perspective on life as an unschooler. My two grown kids are unschoolers, too, and I just think there's something really special about people who've had that freedom from a young age. All best wishes to you!

  10. Thank you. Thank you for being brave and being open.

  11. I've also suffered from anxiety in the past. My specific concern is getting things done efficiently and not forgetting anything, which obsession can lead to compulsive list making and reciting. While I'm not troubled at all by contamination, my mum has the exact same manifestation of OCD that you described towards the beginning of the post. It's very affirming to have other people acknowledge anxiety as a very specific, potentially very all-consuming issue, as opposed to being "stressed out" or "worried" in a more colloquial sense. Equally, it's very distressing to have people try to apply "normal" or proportional responses to things I'm anxious about without understanding the nature of anxiety and how it affects one's ability to feel positive and safe.

    It is my belief that, while some people certainly seem predisposed to anxiety disorders, the unrelenting pressure that the conventional educational paradigm creates is a breeding ground for anxiety and negativity, and is certainly a contributing factor to my own struggles with mental illness.

    When I have children, I would like them to be able to spend their formative years exploring who they are, who they want to be and how they want to use their time on Earth, NOT being forced to be someone they aren't willing or able to be.

  12. I adore your honesty and effort on sharing your experience on having panic attacks. I'm looking forward that you'll be able to get your life back for good! Good luck and God bless!

  13. I have also dealt with anxiety. I have had a terrible fear of choking that has gone on for 5 years now. I tried medication last year that had such bad side effects, that I had to go to the ER a few times. I never worried about my heart before, and now I worry about it a lot. I am very sorry I tried medication because all it did was make things worse for me.
    I have gotten a little better, and am slowly making progress. I do wish that more people understood anxiety.

  14. Great write-up! Writing is a talent, and it must not be wasted. As with everything that we had been entrusted, we should let it grow and share it with the world.> life long learner

  15. Knowledge is power, recognize your anxieties and their triggers and make them yours. Fully accept and recognize the physical and emotional reactions they cause and only then can you overpower them.

  16. It can be quite difficult to act like your normally do, knowing that other people might not understand your condition. Anyway, it’s good to hear that you’re starting to overcome your struggles. I believe that coping is a marathon, not a sprint. You don’t have to force yourself to adjust, because it would only cause you so much stress. Do things that you think you’re comfortable with, and eventually you’ll find yourself fully recovered from your anxiety. All the best!

    Felix Stewart @ Frontenac Youth Services

    1. All of this comes from a really good place, and you're totally right about coping being a marathon. But when you live with this kind of anxiety, there is no such thing as a full recovery. The most we can hope for is to feel some relief so that we can make it through the day

    2. All of this comes from a really good place, and you're totally right about coping being a marathon. But when you live with this kind of anxiety, there is no such thing as a full recovery. The most we can hope for is to feel some relief so that we can make it through the day

  17. The first time I had a major anxiety attack, the doctor put me on xanax treatment but it messed with my head really badly and I had memory issues. I was in a living hell. Later, a friend recommended me this treatment, and I’m very grateful with it, i can go anywhere i want without problem, no anxiety or panic attacks, i'm a new person now. Watch this review, it helped me a lot:

  18. Thank you. I have lived with anxiety my entire life and have spent each day searching for some kind of relief. I also have multiple forms of anxiety, social and general. I have panic attacks, in fact only 2 months ago I had 6 panic attacks in 4 hours and had to go to the ER. I deal with anxiety in everything I do, in fact as I type this my hands are shaking and my heart is racing. My anxiety is also getting worse with age. I am 26 and have it worse then ever before. It feels so good to know that there are others out there who struggle as I do. I always have felt so alone in this

  19. Thank you. I have lived with anxiety my entire life and have spent each day searching for some kind of relief. I also have multiple forms of anxiety, social and general. I have panic attacks, in fact only 2 months ago I had 6 panic attacks in 4 hours and had to go to the ER. I deal with anxiety in everything I do, in fact as I type this my hands are shaking and my heart is racing. My anxiety is also getting worse with age. I am 26 and have it worse then ever before. It feels so good to know that there are others out there who struggle as I do. I always have felt so alone in this

  20. my bag or pocket for emergencies. It's firm enough to ground me, but still malleable enough to not push me away. A beanbag works well too, as well as stress balls. Hangover depression