I have been all over the chronic pain/illness blogs during the last few days, and one theme keeps emerging. Interestingly, it is a theme that I have been tangling with in my real life as well. That theme is the shame attached to being sick.
In my case, the hit is twofold. Not only am I sick, but I have chosen to talk about it publicly. Not only have I done the, “Oh poor me, I feel so sick so much of the time,” thing- which by the way is totally legit and by the way I don’t fault anybody for when, in fact, they do feel so sick so much of the time- but I have also blogged more recently about the dark underbelly of being chronically ill. I have laid it bare, and it is unbelievable- even to me- how unpalatable some people find that truth.
Even *h, who lives this life on a daily basis, was so horrified by what I put out into the public domain that if I tried to express it in words it would be like comparing the Titanic to an inflatable pool toy. Yeah, it was that bad. Sorry, *h.
What is a bit mind-bending to me is how all of us sickies have bought into the idea that we SHOULD feel a sense of shame for being sick. We already feel physically bad, but then we take it upon ourselves to feel guilty and horrible for being sick in the first place. Not only are we constantly apologizing for the fallout from us being sick- cancelled appointments, broken commitments, underperforming, etc.- but then we heap shame on top of it and feel like we have to apologize for feeling poorly in the first place.
We feel guilty for not finding the right doctor, the right treatment, the right therapy- as if a miracle cure is just right around the corner playing a child’s game of hide-and-seek and if only we would look hard enough we could win the game. But chronic illness doesn’t play by the same rules as acute illnesses like strep throat. It isn’t one of those things where you can take a course of antibiotics and get better, and if those antibiotics somehow defy expectations and don’t work you can just take a different one. We don’t have a broken bone you can set and leave to mend. We are unmendable. And it’s often easier for our loved ones to blame us for not trying hard enough to get well than to lose faith in the medical establishment. Because if they believe the blame lies with us for not getting better then they can also believe the power lies within us to get well.
But chronic illness is not such a tidy package. So we feel ashamed that we carry this taint. We are marked by the scarlet I. Every time we repeat our medical history we have to either be apologetic or defensive. When doctors incredulously ask us which medicines we’ve been on we look like drug seekers or hypochondriacs. Believe me, we’ve wondered whether we are too. And we often feel as ashamed as you are willing to make us feel about being on all those meds.
When good Samaritans offer well-meaning advice some people with a chronic illness feel attacked and overwhelmed. They feel like they have to devote their already paltry resources (of time, money, and energy) to pursuing those ideas, however tenuous they may be, just so they can honestly say yes, they have tried an all-yogurt diet; yes, they have tried hanging upside down to sleep; yes, they have tried hyperbaric oxygen treatments; yes, they have tried holding a séance in their bedroom… Some of this they may even believe could hold out some hope for them- after all, your cousin’s neighbor’s best friend’s dog groomer got TOTALLY CURED by doing this thing! But mostly they feel beaten down that they are still sick and ashamed that they are slackers who have not, in fact, tried every single thing in order to get better, which does, in fact, imply that maybe they want to stay sick. Right?
Wrong. This may come as a big shock to some people, so I will say it here first: sick people don’t want to be sick. Unless they have a mental problem (I am not making fun, I am just saying that some people with other types of problems may want to feign or prolong an illness but that’s beyond the scope of what I’m talking about here), people want to feel better. Having a sick day here and there to lay in bed and watch a movie might be a really relaxing break from the daily grind, and you may think from time to time that we have it easy. Trust me- you would never ever on your worst day want to trade places with us. And trust me, we are ashamed that we know you have these feelings. Especially those of us who have “invisible” illnesses, and who look okay on the outside, have incredible guilt that we are not able to function like the world thinks we should. We wish we could pull it together and get or hold or do better at a job. We wish we could socialize more (or at all). We wish we could __________________________________________ (please fill in whatever it is that you want us to be doing and we aren’t, because I’m sure it’s something we feel guilty about and just because you don’t say it doesn’t mean we don’t know it).
What has surprised me lately is that what is worse than suffering is talking about suffering. People are curious about things, but only to a point. If you violate the unspoken social contract and give Too Much Information, you will be shamed.
I should insert a caveat here and say that I have been on the other end of TMI conversations, and they are ugly things. There are definitely things I do not want to know about you, your spouse, your friends, or anyone else. And once something is said it can’t be unsaid. There was a woman in Detroit who used to tell people, “Everything you say has to be true, but not everything that’s true has to be said.” Great, huh?
My beef is with the boundaries of what should be shameful to talk about. One of the blogs I found yesterday was this one: http://duncancross.net/ It’s a pity he is taking a break from blogging, because I love his honesty. An entry on his site has a picture of a woman in a bikini (did I just drive up his traffic by a gazillion percent?) wearing an ostomy bag (he calls it an appliance) (did I just drive his traffic back down?). He speaks truthfully as someone with such an appliance about the struggle to have it not be a shameful thing. I love his courage. I am probably one of the most prudish people you would ever meet, but things like that should absolutely not be shameful to talk about.
I know that most of you didn’t come to this blog to read about the life of some sick lady in Seattle. I really want to thank you for sticking with me through so many trials and tribulations. I feel like I have been uniquely blessed in that I can articulate things that other people sometimes can’t. And so if I am going through something that I feel like other people can learn from, I want to put it out there. I’m sorry if it pushes the boundaries of propriety at times, and I’m sorry if it makes you cringe. This is my real life and I try to live it with integrity, even if that means sometimes I make the wrong decisions. What I really hope is that by me talking about what I struggle with I can give someone else out there the courage to say, “oh, me too…” and to help them feel less alone. I hope that by me standing up and taking the hits, maybe you won’t have to. Because once someone else has said it in public, it demystifies things and opens up a dialogue. So you don’t have to be ashamed. You are not alone.
You are not alone.
You are not alone.