No one wants to know this is only some of your medication. Not really.
“It’s okay, I’m used to it by now.” This is the sort of thing we say to each other when we talk about our chronic conditions. This is the sort of thing that I’m used to saying, that I’m used to hearing from my friends with long-term or chronic health conditions, no matter where they fall on their stages of dealing with the situation and learning to cope, whether they were diagnosed yesterday or ten years ago.
The reason we say these things is because this is what able-bodied people want to hear. Those of sound body and mind want to be reassured. They want us to say: it’s okay, I’ve learned to deal with it. They want us to say this not just because they’re uncomfortable on a deep psychological level with thinking about the state of being chronically ill (which goes so far into the monkeybrain that I can’t even blame anyone for it, it’s terrifying to think about being sick forever – what if a tiger? What if a pack of hyenas? Exactly.), but because it’s a way to end the conversation, and because it’s a way to reassure themselves that if they ever themselves should become one of us, that they, too, would “get used to it.” They want us to tell them that if this ever happened to them that they’d be fine.
Well. Unfortunately, honey, I have some bad news.
It’s not fine. It is something with which we cope, a situation with which we learn to deal, a change to which we learn to accustom ourselves. That doesn’t mean I don’t look at my (incredibly talented, very able-bodied) sisters kayaking and taking the stage with a band, performing their hearts out, talking about going on a run but being stopped by the rain, and feel a deep, heavy jealousy.
That isn’t my life, and it isn’t ever going to be my life ever again. I will find ways to enjoy nature, but kayaking isn’t in my future for a number of reasons. I will never be a runner. The conditions that prevent me from doing the things they do are permanent and inescapable.
And it’s not okay. And I’m not used to it.
This is one of the white lies that we tell our friends and family, over and over again. Maybe it’s one of the white lies we even tell ourselves, but it isn’t doing us much good to say it, even if people don’t want to hear “Actually, it really fucking sucks, and I’m really lucky to have a strong support team who help me develop coping mechanisms so that I can get the most out of my life.” That’s the truth, and the people who don’t want to hear you say that are not people you need in your life.
It’s not okay, I’m not used to it, I never will be, and the people who actually matter will understand this sentence, my need to say it, and my need to be heard when I do.
This essay was originally published on But You Don’t Look Sick.