I’m Really Good At Being Sick
So good that the people around me sometimes forget that I’m sick at all.
I was recently privileged to celebrate 16 years since my first liver transplant. My chronic illness journey, with Primary Sclerosing Cholangitis and Ulcerative Colitis, started a number of years before that. All in all, I’ve been a professional sick person for about two decades.
That’s 20 years of symptoms, side effects, major susceptibility to illness, and a whole host of other issues. I’ve been chronically ill for more of my life than I haven’t been, and at this point I don’t remember a life without illness. It’s second nature to continue my normal day with some combination from the buffet of nausea, soreness, headache, low-grade fever, itchiness, tingling in my fingers/toes, fatigue, anxiety, depression, and so many more. Chances are greater that I’m dealing with one or more of those things rather than not. And, being honest, that’s okay with me. That’s my life; I’ve come to accept it. (Most of the time. There are highs and lows.)
With my conditions there are a lot of what I call “anchor points” in my illness — times where people outside my immediate support network know and expect me to be performatively ill. Two liver transplants, a total proctocolectomy, liver biopsies, hospitalizations, and countless other procedures have brought out a lot of my extended support network which is amazing and so appreciated.
But in the times in between these anchor points or in a certain window after each anchor point, I frequently get people around me telling me how well I’m doing or how good I look.
Which, I get it. What people mean to say is that they’re glad to see I’m up and around, that I’ve either put on or lost what’s deemed an appropriate amount of weight, that they’re proud of how “strong” I am (whatever that means). I know that it comes from a place of love and support and is meant to make me feel good and validated.
Frequently when I’m told how well I’m doing, I’m not really doing that great in one way or another. I’m usually carrying one of the multiple forms of baggage that comes with being sick a lot, I’ve just had a helluva lot of practice with it. Because it’s my day-to-day existence dealing with these things, I’ve become a pro. When I’m told how well I’m doing or how good I look, I often don’t feel that great or think that I look particularly good. Chronic illness is hard. I carry it with me everywhere I go and think about it most minutes of most days. While I may look good, there’s a pretty good chance I don’t feel that way.
What a compliment like this shows is a lack of understanding of the permanence of chronic illness. Or, at the very least, it fails to acknowledge the constant weight of chronic illness.
I know what’s usually meant by the compliment and to be honest, I don’t know how to make it better nor do I expect everybody to know how difficult chronic illness is. In fact there’s a large part of me that doesn’t want people to know, because if you do know that means you or somebody very close to you is in the chronic illness club.
If I could give any advice, it’s to phrase it something more like “I know that chronic illness can be a huge struggle and I’m happy that you were able to make it today/to see you”, which may also not be perfect. Ask those around you dealing with chronic illness how they want to be acknowledged, if at all. Let us drive the bus and we can help steer you in the right direction.
No End In Sight is a place to read and share stories about chronic illness in our own voices. You can also listen to these types of stories on the No End In Sight Podcast.
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Previously on No End In Sight — Tactics For Working With Chronic Illness
