10:49am May 8, 2013

Reading an actually decent book about chronic illness…

…only throws into sharp relief the amount that I hate the mainstream of “chronic illness culture” — the self-centered ness, the self-pity, the focus on trying to get healthy people to pity us all (instead of understand us or respect us or something) for our suffering yet the disdain for understanding suffering that doesn’t arise from chronic illness. It’s all been weighing on me and I keep trying to write about it and giving up halfway through, frustrated with everything I read.

This is only the last straw to getting me to write this. The second-to-last straw was recently reading something by someone with one of my (many) illnesses, trying to get people to understand “what it’s like” for us. Only the what it’s like wasn’t so much about what it’s actually like to have the illness. The person writing it couldn’t even see what it’s actually like, because she couldn’t see any reality about the illness through all the endlessly magnified self-pity (even the “empowered” parts sounded self-pitying somehow). So that all that would be accomplished by her article was getting other people to pity us, and that rings incredibly hollow.

And it’s not that I don’t understand that chronic illness results in a lot of suffering and assorted other crap, but if all you do all day is stare the crap in the face you’re going to be miserable. There are genuinely ways to avoid the recursive mess of feeling bad about feeling bad about feeling bad about feeling bad about whatever’s actually going on. Each level of recursion only makes it worse.

Another source of pressure is reading all the time that I’m not supposed to say any of this, that all of us handle illness in different ways so I shouldn’t talk about it when everyone seems to be actively encouraging each other to feel terrible. To the point where people would probably feel better if they never encountered this particular culture of chronic illness. Like first there’s a rush of happiness at meeting all these people who understand, but it doesn’t go beyond that, and people who were initially coping better become mired in not coping at all because of the way the culture encourages everyone to form massive pity parties.

Meanwhile people who don’t want to get mired in that mentality, and see it for what it is, keep our distance, or at least only put a toe in to these communities and get most of our support elsewhere. It’s frustrating to me because I want to find places I can get genuine support. As in, from people who know how to actually cope, rather than endlessly commiserate about how terrible things are. And that’s what I found in this book.

Which is called _Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties_, by Laurie Edwards, and it’s available for Kindle. It doesn’t shy away from the emotional issues, but it also doesn’t wallow in them, and that’s exactly what I’ve always been looking for. It gives a lot of practical advice about how to handle most areas of life, some of which I knew already but much of which I didn’t. The author also describes a lot of things about managing the impact on friends and family that I practically never see discussed in most chronic illness communities because it would require seeing past your own suffering. It even points out everything wrong with becoming so self-centered that you start wanting to rag on healthy people for complaining when they get a cold or the flu. Whereas in these communities I see so many people doing exactly that and getting backed up for it. Despite my differences from the author and most of the other people profiled in many ways (being poor, unemployed, lesbian, single, etc.) I found myself identifying a lot more with her point of view on things than I do with most people in these communities. It wasn’t as much what she said, as the maturity to look past herself in general that came through between the lines.

Also before people start worrying, I should point out that I am totally with people when they want to gripe about a bad day, when depression and other mental health issues are involved, and things like that. But I won’t feed my own pity into anyone’s self-pity or suggest that long-term self-pity is inevitable for people who have severe enough problems and that I just don’t understand how uniquely bad their situations are. We all have moments, and we all need people to understand, and suffering is real, but suffering doesn’t have to become endlessly recursive. And it’s just not true that there’s no way to help it when it does become permanently recursive. Our feelings come from ways of thinking about and understanding the world, and I can often see the hidden thoughts and assumptions underneath the surface. And no, I’m not “shaming” anyone who isn’t dealing with things particularly well at the moment.

For instance, the gist of a lot of people write when they try to get people to understand chronic illness, is something like, “Imagine what it would be like if you couldn’t lead a normal life, couldn’t do all the things you take for granted, imagine how terrible that would be, well that’s what I live every day, please feel terrible for me.”

Which contains a lot of assumptions I won’t go into. But the biggest one is that there’s such a thing as a normal life, that this so-called normal life is something that ought to be guaranteed to us, and that simply not having that normal life is what makes us suffer and feel terrible. There’s a huge sense of entitlement there, and it’s usually a sense of entitlement to things that very few people in the world actually have. Often I have fewer of those things than the people writing the articles do, and yet I’m also usually happier. Not because I’m just somehow better and better off than they are, but because I’m more able to examine my emotions and the assumptions that cause them and do my best to get rid of the most messed up assumptions. We all tell ourselves false stories about the world, but it’s possible to learn to look at those stories and throw them out, and being able to do that tends to make people feel better in the long run even when the stories are superficially positive ones. It can cause a lot of short-term serious upheaval in one’s life, but in the long term things work out better for the most part. Change can hurt.

Anyway, I get frustrated with all this. Not just because it encourages long-term self-pity and discourages anyone from talking about how messed up and dysfunctional it all is. (Because you aren’t supposed to question anyone’s ways of dealing with illness no matter how much harm they do, and not only to themselves either.) But because it keeps people from getting actual support for practical ways of dealing with chronic illness. Because people who see this for what it is, take one look and run the other way.

And that in turn makes this community the main “face” of chronic illness people see. Which means that people like me get seen as having very unusual reactions to it. When the reality is that my response to chronic illness is pretty normal. It’s what I’ve seen in a lot of people. It’s just that people like me normally tend to keep quiet about it. And are encouraged to keep quiet and discouraged from speaking up in a huge number of subtle ways. And that the community feeds on its own dysfunction and makes itself far more visible in terms of how it deals with chronic illness, than people like me tend to make our own ways of dealing with it. Because we aren’t generally a big community and we don’t tend to have as much of a forum for discussing our experience where we will be heard.

So instead of hearing about people who integrate chronic illness into a complex view of ourselves where it’s a part of ourselves and not wholly a bad one despite the huge problems it can cause, you hear about people who spend years or even decades failing to get over the fact that their lives aren’t the so-called normal ones they planned for. And other things like that. And pity continues on.

This isn’t how I intended to set out to write it, but reading this book, by someone who has clearly put a lot of thought into how they approach chronic illness for their own sake and that of others, finally made all the words come out at all the right times and in all the right ways.

I’m not done talking about this. In fact, I think I may be just beginning to be able to truly talk about this. Because this may be just the start of my ability to tell people what it’s really like for me. It’s hard because nobody has given me the words to talk about it. The only templates I have are the pity templates that I refuse to use. So I’ve been mostly silent except in the areas where the chronic illness community agrees with me. Because I haven’t had the words to talk about where it disagrees. And I want to work harder at talking about that, because I think people like me have a lot of interesting things to say about how we approach illness, that would seem counterintuitive to people who have only been exposed to the ideas that tend to result from pity or self-pity.

All this, by the way, has always been my hesitation to fall in love with the idea of spoon theory. Because there was always this little element to that story that seemed to be about making her friend feel as bad as possible for her. But the spoon theory article is actually among the tamest of the “please understand how terrible it is to live my life” articles I’ve seen in various chronic illness communities. There’s much worse out there. And I just read a whopper of one recently, which sparked my most recent attempt to write about this. That is, before this attempt, which was sparked by reading a book that didn’t even come close to falling into any of these traps.

  1. subgirl reblogged this from youneedacat and added:
    This is why I both loved and hated the chronic pain support group I went to. It was a group of people who, for the most...
  2. quixylvre reblogged this from madeofpatterns and added:
    I’ve found two videos I use in combination with the explanation of “spoon theory” to illustrate why I have to sometimes...
  3. clatterbane reblogged this from raposadanoite and added:
    Low on words right now, but well said. Reblogging for commentary.
  4. bunnika reblogged this from thelamedame and added:
    Okay so I own that I didn’t get all the way through this, but that’s because I’d been BOOTSTRAP'd out before I could...
  5. thelamedame reblogged this from youneedacat and added:
    _Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties_, by Laurie Edwards, Fantastic book...
  6. raposadanoite reblogged this from youneedacat and added:
    Thank you, that just helped me to understand in words why I feel conflicted when reading what many people with chronic...
  7. youneedacat reblogged this from madeofpatterns and added:
    I don’t mind the idea of spoons, although it doesn’t entirely work for me experientially. It’s the actual article it...
  8. adelened reblogged this from youneedacat and added:
    Oh hey, yes all of this. I think this applies in a sense to social justice communities, too - less so, ‘cause convincing...
  9. megachiropteran reblogged this from youneedacat and added:
    I have a lot of thoughts but I’m not sure I can construct a coherent response right now, and I’d like to respond to this...