Some disabilities are visible, and others are not. They each have their own challenges. I can’t personally speak about what it’s like to have a disability that is obvious to others. If someone who has experience with that would like to write a guest post for this blog about their experiences, please contact me.
My disability is chronic and debilitating, but it is not visible. When it is flaring up, people sometimes notice symptoms. But most of the time, it is not obvious. While that means I don’t always have to deal with other people’s biases or awkwardness, it also means that other people typically don’t understand or respect my limitations.
It can be difficult for others to accept or remember your restrictions when “you don’t look sick” – especially if they have never personally experienced a chronic illness or disability. They may become offended when you cancel plans you had made with them, or don’t keep in touch as often as you used to. Or, because they don’t understand your limitations, they may try to convince you to do things you know would be detrimental to your health. They may even imply that you are lazy or “faking.”
Before my condition became debilitating, I didn’t understand when someone with a chronic health condition told me that sometimes it was just too exhausting to go to church because so many well-meaning people would come up and ask how they were doing. I didn’t understand when I read on a blog that a person with a chronic health condition had gotten divorced because they just didn’t have the energy to cope with their health *and* try to sustain a relationship. Now I understand.
If you have an unseen illness or disability, and you have people in your life that you would like to have a better understanding of your reality, I highly recommend this post by Christine Miserandino. (You can also download it from that website as a pdf.) It’s called The Spoon Theory, and it’s the best explanation I’ve seen of what it’s like to live with a chronic, debilitating condition. Even if they still don’t really get what it’s like to be you after reading the article, at least it will give you a common vocabulary to explain things to them. I find it very helpful to be able to say, “I don’t have enough spoons for that,” or “If I do this with you, it will take all of my spoons, or nearly all of my spoons, and then I won’t be able to do x, y, or z. Is that how you would like me to spend my spoons today/ this week?” It helps make my reality a little more tangible for others.
P.S. – If you’re wondering what the people at church “should” have said to the person with the health condition – if you’re wondering what the “right” thing is to say to someone you know is coping with an illness or disability – I recommend “It’s nice/good to see you.” It acknowledges that you noticed I haven’t been around, and you noticed I am here today, but it doesn’t require me to spend my limited energy talking about my health. If I’m feeling well enough to be here today, I probably don’t want to be reminded that I frequently *don’t* feel well enough to attend, and I don’t want to feel defensive about my limitations. Just say “hi” – it’s enough.
