The Secrets About My Rheumatoid Arthritis Hidden Behind My 'Great Hair'

That is my secret to looking “normal.” Great hair. And “But your hair looks great!” is what people have actually said to me upon hearing I have rheumatoid arthritis (RA). It’s code for “You don’t look sick at all!” And they’re wondering to themselves, “Why is she saying she can’t do something? She looks fine.” Many people with a chronic illness have the same story. I figured I might as well inject a little glamour into my life by not giving up on my looks completely.

But the secret behind great hair is a little less glamorous. It’s very painful for me to wash/dry/style my long locks, so I don’t wash them very often. I was diagnosed with rheumatoid arthritis almost two years ago, but the “journey” (as many patients so aptly call it) to getting said diagnosis took three years and five doctors. But back to the hair. Now that I’m in my 40s, like most people my age my hair and skin are a lot drier. So when the pain started and lifting my arms above my head became difficult, I went from washing it every other day to washing it twice a week. As the pain grew worse, the washing grew more infrequent. It became almost like a weird little game to see how long I could go between washings. Now don’t worry, I showered every day, and my hair stayed intact because of my beloved shower cap. But the washing of my hair became less and less frequent. The dirty truth is that now the average is every two weeks. Sometimes three! The secret to keeping it looking and smelling good? Baby powder. Every night after I shower I douse my hair in baby powder, run it through with my hands and head off to bed. I also leave on my eye makeup for a few days, it also being painful to apply. I just wash around my eyes well and leave it be.

Why am I sharing this somewhat gross admission? Because this is the reality most people don’t speak of. For those that want to better understand the “spoon theory,” here it is. Doing these simple tasks hurts, so I found a way to still look like myself while feeling like a creaky sloth has taken over my entire body. Maybe I am a little vain. (I had brain surgery when I was 28 and was way too concerned about my hair, much to my doctor’s chagrin.) OK, very vain. But I don’t want to completely lose myself to this disease. I’ve already lost my ability to work, because as a hairstylist, my stiff, unbending fingers simply won’t work with me. And my back is so bad that I can’t stand for more then a few minutes before the pain kicks in.

But I still want people to see me. The old me. Not the sicker version of myself slogging through my days. I want my kids to remember the fun, playful mom, not the “sorry, I can’t, girls – I don’t feel up to it” mom. I adore playing with them. So I hide the pain and exhaustion behind a smile and have all but given up on going out at night, because the nights belong to my heating pad. Oh how I look forward to that blessed thing! And when I’m at school pick-up or out on my errands and I get a comment about my hair, I feel great. Like my old self. I have enough reminders of all the things I can no longer do, and the list keeps growing every day. But my long beautiful hair? That I’ve still got. And for now it’s got to be enough…

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock.