Put on a Show
I’ve often said being young with Rheumatoid Arthritis presents some unique challenges and deciding to show my symptoms is a regular debate. I do have a disability placard for my car that I often use at the grocery store or at work when I carry multiple bags. I’ve never been asked for my ID or proof the placard is indeed, mine. I honestly haven’t even gotten many looks from strangers.
To show RA or not?
Regardless, there is always a small part of me that wants to put on a show. I’m not saying I’m faking my pain or stiffness but sometimes, I just want to exaggerate that slight limp on my right side or move my fingers a little more to show my discomfort. Autoimmune conditions are difficult because most of our symptoms are internal, meaning they aren’t seen. We feel sick, we feel the pain, we lack mobility, not to mention we deal with a million side effects from hardcore medications. If we are lucky not to have physical damage yet, we look young, we look healthy and for lack of better term, we look able-bodied.
Trying hard to keep the impact of RA invisible
I’ve spent the last eight years putting on a “brave face”. For a good chunk of it, I felt isolated and depressed but, because of my pride, I didn’t want to show that weakness. I expended a lot of energy (probably some could have been allocated elsewhere) looking healthy. I put more effort into diet, exercise, skin care, and beauty just to make sure I didn’t look sick. And, as a result, some good things happened, but I also endured some nasty comments from “friends” who just didn’t believe me, called me lazy or unambitious (they are not my friends anymore, by the way). It makes me wonder…I don’t like how drawn and pale my skin looks after methotrexate so I use an illuminating moisturizer. I drink water like it’s a paying job so I don’t look normie sick. I wear loose clothes so people can’t see me struggle in regular ones and I take frequent movement breaks so others don’t see me try and get up from a long sitting position.
It doesn’t help that I climb almost twice a week. I look happy, I look able-bodied, I don’t look like every movement I make reminds me I am potentially hastening the permanent destruction on my joints…So, am I doing this to myself? Saying no doesn’t help. People think I’m faking or making up stories. They think I’m a hypochondriac, all because they can’t see the internal agony I endure every single day. Should I show my illness a little more? Let my skin and eyes look dead when I am really not feeling well, use my cane more often or ask for help (laugh out loud, we all know that’s not going to happen)?
Hiding my disability through isolation
I found that the best way to show I’m able-bodied is isolation. I isolate myself on the days I barely make it out of bed or have more intense swelling in my joints. I don’t want people to see me weak. Aside from my family and two best friends, no one has seen me disabled but maybe more should. Maybe I should stop thinking of it as a weakness but as a way to advocate for myself and invisible illnesses.
Do you have any physical signs of your RD yet? If not, do you ever feel the need to show your illness a little more or are you like me and want to hide the signs?
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?