The first time I was in the United States was in 2004. I was an exchange student who had moved from an urban European mass university to a small liberal arts college in the Midwest. George W. Bush was still president and would win a second term while I was there. At the age of 23, I stayed in a dorm full of freshmen, and did not especially care to be lectured on “no sex before marriage.” After two weeks, my RA took me aside, and asked me why I rarely ever smiled. I explained to her that I was miserable, homesick, and hence did not see a reason to smile. But, I also confidently told her, I knew it would get better soon. Sometimes, you have to ride the bad times out. I considered (and still do) myself fairly optimistic in that way, and almost fell off my chair when I received a phone call from a worried sounding school counselor- what could be done to make me happy? I still replied, nothing. Things suck, but they couldn’t suck forever.
This in very broad strokes is my attitude to my Crohn’s. Sometimes things suck. They suck big time, they suck ass, they are terrible. I could have done without the five surgeries, trans-rectal drain, post-surgery pain, endless recovery, fatigue etc. I did not ask for them, and when they came, I suffered. Generally, I try to not take it out on my loved ones, and I am also trying to be a pleasant human being most of the times. Unless, someone tells me that my attitude can change “a lot of things” and that negativity and stress causes my Crohn’s.
The “positive thinking” movement is harmful, counter-productive and a blatant expression of privilege. I may repeat some of Sara Ringer’s take-down of “positive thinking”, but the topic is important enough that it bears repeating.
I am not against being positive per-se, and I don’t think that trying to look for the good in a certain situation is wrong. I also don’t think that mediation techniques are evil. But here is an example where they work vs when they don’t work:
When I fell off my bicycle as a kid, and my knee was bleeding. My mum would clean it out, put a really colorful band-aid on it and sing a little song. Between picking out the coolest band-aid and listening to her song, the burning sensation didn’t feel as horrible as it had five minutes ago.
Telling me to go on a “dream journey” and repeating positive mantras in my head when I have post-operative pain and can’t sleep won’t work. It will reveal your privilege of being able-bodied, your ignorance and utter lack of empathy.
- Privilege: Being able-bodied and healthy is a privilege, in more than one respect. You don’t have to worry about your health, you probably can’t tell me the co-pay amount your insurance requires for a specialist, and you have never worried about being laid off (or never even hired) because of your disease. Like most other forms of privilege, being able-bodied is assumed to be the norm, and unless it’s pointed out, people don’t even notice that they have it. So it’s easy for you to talk about “empowerment” and telling me that whatever the universe gives me is a result of what I put out. I on the other hand, am puzzled as to what I could have possibly done to get a perforated stomach?
- Ignorance: I don’t expect anyone but my doctors and nurses to know about Crohn’s. I do however expect the courtesy of not being dismissed as dramatic or being showered with tips ranging from castor oil wraps to talking to “healers.” It only shows that you don’t quite know what you are talking about. If you want me to share and be open with you, then just listen.
- lack of empathy: Here’s the real crux and the most hurtful aspect of the whole situation for me: Most people actually mean well when they suggest yoga, positive mantras and other things for me. Indirectly, you are putting the blame for my situation on me. You are telling me that had I only eaten the right things, had I gone to yoga, said my mantra properly, and smiled more, my auto-immune disease would not have flared. That is not how this works. I actually do go to yoga (not right now, but that’s another matter), I happen to be a positive person, and most of my friends actually can attest to a sense of humor that I have. Moreover, think of the damage these words can do to other sufferers? For example, people who suffer from clinical depression? They will feel further stigmatized for needing medications and seeking therapy, instead of being applauded for it.
Being pragmatic, making the best out of a crappy situation are values I was raised on and values I aspire to live as well. To do this however, you need to acknowledge that not everything can always be hunky-dory. As my dear grandfather would say, you can’t turn horse shit into gold, but you can use it as fertilizer for your roses.