The Privilege of Being Sick

It took being sick for me to realize my privilege. I mean truly realize it, not just say things like “I’m grateful for my life because some kids in Nicaragua don’t have clean water like we do.” I feel like that’s the typical millennial hipster thing to say, or the entitled rich person thing to say, and while I don’t fall into either category, I’m sure I’ve said similar things many times, especially before I got sick.

I lived twenty-one years as a healthy, straight, white male. It doesn’t get much more privileged than that. I guess I could have been a healthy, straight, white male with a billion dollars, but then I’d be really hating myself right now.

I’m not proud to say that it took getting sick and losing some of my privilege for me to grasp how fortunate I was as a healthy person. But it is one of the few good things that has come from my poor health. This is not to say that now I fully grasp my privilege or feel that I am done learning from, and empathizing with, other people. But I am actively working on it.

After I got sick I realized: I’m still more privileged than a lot of people. I still lived in a safe place. I still had food to eat and clean water to drink (okay, maybe I am a millennial hipster). People still took what I said seriously, though sometimes they didn’t take my illness seriously.

As much as it sucks living with a chronic illness, I have to recognize that my life could be worse. Being a woman in my situation, for instance, would be significantly harder. I won’t even pretend to know how much harder it would be, or in what ways. All I know is that I face a level of skepticism from the medical establishment that makes me want to throw those tongue depressor things at every doctor I see. But I now know that women, especially women of color, endure much worse, and I doubt they ever throw tongue depressors.

I have seen women I love deal with medical neglect. They have been told that the severe physical Illnesses they have are merely manifestations of their minds. They have been told that their symptoms aren’t severe or even real, when they are in fact both of those things. They have been told by corporations that their needs don’t matter as much as men’s.

One example: Companies make a selection of convenient “bathroom” products for men who are bedridden. They don’t do this for women. They don’t make bedside urinals for women with nearly as much functionality as they do for men. This is the kind of privilege that, though not glamorous or prosperous, I have come to recognize while I’ve been sick.

I’ll acknowledge that my poor health is a substantial disadvantage in life. Some people are sick and more privileged than me merely because they are able to walk and talk and travel and pretend to be healthy when they’re not. I’ve been that level of sick, and while it’s better than my current situation in some ways, it’s certainly not without suffering. But the point is not to compare myself to people who are healthier than me, it’s to acknowledge that almost anyone else in my situation would have a harder time. And that’s just not right.

My life is hard. It’s difficult for me to even wrap my mind around it potentially being harder. But it could be. My life would be harder if I wasn’t white. It would be harder if I wasn’t a man. And yet, my life still feels impossible. It feels so impossible that, if it was any harder, I would want to give up. And I think that’s one reason why some people with illnesses like mine do give up.

It’s also why we need to make life easier for sick and disabled people. And not just because it’s the moral thing to do, or because it’s owed to us. We contribute to society. We make art. We invent things. We start businesses. We pay taxes. We do so many things, just like healthy people, but we could do even more with a little help. Our culture and economy would be better for it.

BEFORE YOU GO…

1. Thanks for reading!

2. If you would like to donate to support this blog I would be so grateful.

3. I am fundraising to pay my medical bills and if you’d like to help out by buying a shirt or hoodie I’d be equally grateful.

5 thoughts on “The Privilege of Being Sick

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  1. You are an amazing and courageous person! Don’t ever give up because you are making a difference in a positive way. Thank you for following BrewNSpew.

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  2. About 20 years ago, when I got this illness, my mother-in-law told me that even though I was ill, I was still more fortunate than many others. I was incredulous. I was simply suffering too much to really understand or feel the truth of what she meant. Well, now, 20 years later,I get it. Even though I am housebound much of the time, I can still sometimes get out. I don’t have financial worries, since, thank god, I opted for long-term disability on my job. I’ve been married for 36 years to a loving, supportive husband. I’m able to see a prominent ME/CFS specialist. So I am now, finally, able to appreciate the “privilege” of being horribly ill in an otherwise relatively positive life situation. But it sure took me a long time to get here. And I think my current level of acceptance is rather tenuous, because if I start getting worse again, all bets are off.

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  3. I’m in a similar position: I’ve had this thing for almost 30 years, and it is, has been, and will continue to be horrible (and yes, women face more problems with it than men). But I was still able to move to a retirement community after a (very restricted) life in the suburbs. Here I can use the pool and the adult trike (very rarely, and with payback), and am in far worse shape than many older people here.

    But… I am barely managing as it is – and I can’t imagine how so many people survive on far worse.

    I’m trying not to complain about how hard it is to get back to writing fiction after the move.

    But, darn it, life could be SO much better! And I’m sure whatever I learned from a chronic illness has been learned long ago – couldn’t I please stop this experiment?

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