“You can’t be on here with that,” a woman told me earlier this week. I was riding the red line train to Hindi class. She waved pointedly at my PICC line. I smiled at her.
Sometimes they’re less outright ridiculous. “Is that on your list of things you can eat?” someone recently asked at a party. “Definitely not,” I answered, laughing. “Thank goddess for Benadryl.”
Then there are the comments about the big decisions, that are harder to find funny.
“I think you should just go on disability.”
“I don’t think you should live alone.”
“It’s not safe for you to travel.”
“You shouldn’t go out alone.”
And so on, and so on.
Or how about these:
“I didn’t think someone so sick could do that.”
“If you’re too sick to go into work, you’re too sick to go to the store.”
“If you’re healthy enough to take the train, you’re healthy enough to do this.”
Everybody has an opinion.
Society in general has expectations of the sick. They expect you to get better or to die. This has been demonstrated in sociology studies. Obviously, a great number of us live in the grey area between getting better and dying. We’re not going anywhere and the general public doesn’t know what to do with us.
There is also an expectation that we will try to get better. Of course, how the public thinks that should look and how it actually looks are rarely the same thing. If we don’t fulfill their criteria for trying to get better, we are told not to complain when we don’t feel well. There is seemingly no end to the commentary.
Living with mast cell disease takes a lot of work. I take handfuls of pills all day long, eat low histamine, try to stay as cool as possible and still react every day. I react to things that are unavoidable, like sunlight and humidity and stress. I have made the choice to lead as normal a life as possible for as long as I can, even though walking outside literally makes me sick. This doesn’t make better than people who choose to isolate to avoid reactions. It just makes me a sick girl who made a different choice.
Sometimes I do things that I know will make me sick. These include things like exercising, eating a piece of cake, sitting in the sun. I am an adult. I am an autonomous human being who can make her own choices. The reaction I get sometimes is absurd. “I can’t believe you think it’s okay to do that, when everyone worries about you all the time,” I was told not too long ago. “I can’t believe you think you get to judge me for eating a meatball,” I replied with mock horror. I mean, come on.
I spend my days calculating risk. A lot of things I enjoy have been sacrified on the altar of mast cell disease. A lot. Sometimes I really want a chocolate frappe or to go to a party in the summer heat. I don’t need to be reminded that I can anaphylax at any time. I am aware of this fact.
So if you’re wondering what an appropriate way is to make these types of comments, there isn’t one. If you ever feel tempted to second guess how someone manages their body and their illness, don’t. Even if you feel you’re doing it out of concern. It’s not helpful. Trust me. For some reason, people seem to think that my illness gives them the right to judge my actions, even if they wouldn’t do it to a healthy person. The odds are pretty good that you don’t walk up to people eating dessert in a restaurant and dazzle them with your knowledge of obesity related health issues. And if you do, stop. Just stop.
When this really bothers me is when it happens among people who sick. Every sick person thinks they have the best way to be sick. I see this all the time. “Why aren’t you on this?” “I have that and I still work.” “Why don’t you wear a mask?” Everyone is different. And even more, everyone’s life is different. I don’t know if I would stay home if I didn’t have to pay my bills, but I do, so it doesn’t matter. We all do the best we can in the confines of what we can do. Cheating on our diet or staying out late doesn’t make us bad people. It makes us normal for a fleeting moment.
Tonight I walked down the street in 85 degree heat to get a chocolate frappe. It was great. I needed Benadryl a half an hour later. I’m still pretty flushed and I don’t care. If I were to give anyone advice on the best way to be sick, it would be to do it in whatever way makes you feel the most like yourself. Do it in whatever way allows you to do the things that make you happy.
Turns out, there’s no right way to be sick.