Fighting with the Mirror
Sometimes I get angry with the mirror. I feel it doesn’t reflect how I am feeling—specifically, how I am feeling on a bad RA day.
There’s the saying: “It is always better to look good than to feel good.” (Thank you to Fernando Lamas as played by Billy Crystal for bringing that aphorism to life!) But in reality, I don’t really believe it. I suppose that I should be grateful to frequently look better than I feel, but sometimes I wish my face revealed a truer portrayal of how I am feeling.
Perhaps part of the problem is the mask I put on. The cheery smile and the eyes that mistakenly convey I got a solid night’s sleep. I know I do put on a positive front because I don’t want other people to be worried when I am not doing well.
Days when RA shows on your face
But there are days when I’m having a painful RA flare, or haven’t slept, or have terrible side effects (like a migraine or stomach ache) that I want it to show on my face. I want my eyes to say: “Kelly feels terrible today so leave her alone or give her a pass.” I want my skin to be as pale and fragile as my joints feel. I want my hair to be standing up on end in emphasis of those terribly aching joints. I want some of the drama of the disease to show up in my appearance so that I don’t have to explain—I will just be understood.
When RA is visible
People see my wheelchair and observe my joint deformities. What they see often affects their perceptions of me and how they treat me. A lot of time, this is bad.
The good thing is when people get to know me and become accustomed to how my RA and disabilities look. They may forget or never realize that I have an active chronic disease, that I have many days when I feel terrible because of this illness.
While on the one hand, it’s great to experience acceptance. On the other hand, I want the people in my life to understand that I may be smiling on a day when I feel absolutely the worst. My joints may be aching, fatigue may be pulling me down, or some other weird RA symptom or side effect may be making my life hell. I may be looking good, but feeling less than stellar.
When I look into the mirror, some days I am thankful for the smokescreen that my face places over my RA symptoms. Other days, I wish it would tell the real truth. I’m not sure I’ll ever be satisfied and think I may just always be fighting with the mirror day after day.
Maybe the important lesson is that I need to share how I’m doing when I am comfortable doing so. I don’t want to place any burdens on others, but if they know my face keeps secrets than maybe they can support me better on my bad days. I don’t always have to play the superhero, though it may be nice to wear that winning smile.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?