I’ve found there’s a fine line between wanting people to recognize your disability and not wanting them to treat you different because of it.
Because we do need them to treat us differently.
There are accommodations to be made for those of us with a disability, whether they are dietary needs, a ramp or elevator instead of stairs, avoiding perfumes or strong smelling candles, extra time to get around, or braille and sign language. We need these things to go about our daily lives with some sense of normalcy, and yet it is the needing of these things that sets us apart from being normal.
I often find myself thinking, “I want you to realize that I’m not like you but I am.”
Which, of course, is confusing even to me. Imagine if I said that to my family.
The crux of it is that I want you to treat me just like you did before I got sick, while still remembering and recognizing that I am not that same person. I want you to still call and invite me out, but I need you to be sensitive to the fact I may have to decline. And please don’t get angry if I do have to say no. I want to still hear about your day, but please forgive me if my brain fog means I have to ask you to repeat some things.
I know that you hurt. I know that if you stub your toe, it stings like a mother-you-know-what. It’s okay to tell me you hurt. You don’t have to hold it back because it’s not on the same level as my chronic pain. Yes, I have learned how to live with a certain level of pain, but trust me- it still hurts like a mother-you-know-what when I stub my toe, too. The same goes for emotions. Don’t hold back from venting to me because you know I battle depression. Yes, you being sad about the ending of a movie or book isn’t the same as the crippling sadness that hits me, but that doesn’t make it any less valid. And sometimes it’s really healthy for me to hear that the rest of the world has feelings, too.
As hard as it is for us to adjust to these new lives with chronic illness, we often forget that our friends and family are struggling to adjust to the new us. Even after two years of battling, my fiance still has moments where he hesitates in how to treat me, and he spends every single day with me and my illnesses. My mother swivels between fretting that I’m in the hospital because I didn’t answer her calls one day, to steadfastly arguing that all of my health problems will be solved if I had weight loss surgery. I have friends who don’t understand why some days I use my cane and others I don’t, and that it isn’t always based on my pain levels…
I guess the bottom line is that there will always be some level of misunderstanding when it comes to chronic illness and disabilities. If we have such a hard time understanding our own bodies, how can we expect those around us to do any better?