Wednesday, April 6, 2011

Maybe Not Looking Sick... not the worst thing in the world. We get so frustrated and angry by that comment, interpreting it as an affront to the reality of our suffering, a question of the validity of our illness. But if 6 months on high-dose Prednisone has taught me anything, looking sick really sucks! I grew Gorilla hair all over my body, picked up a sweet little mustache, blended my liquid makeup into my sideburns and plucked wayward eyebrows daily. My face puffed up like a fleshy volleyball and my gut looked either pregnant or full of beer, I could not differentiate. I have been off it almost 2 months now and last week finally got up enough courage to take new pictures for my profile and the website for The Fibromyalgia Crusade. Of course my hair and makeup had to be done, and Yorkie & Porkie each got a trim and a bath. And I still weigh quite a bit more than I did before Lyrica-then-Prednisone, but at least feel somewhat human again. Like I mildly resemble my former self just a little bit and am putting forward the best face I can.

So how do we keep the integrity to not trash our appearance but still convey we are really ill to doctors, family, friends? I advocate in my Doctor Appointment Pack to pay attention to your appearance when you go see your doctor. Change out of those sweats and wear some street clothes, comb your hair, put on a little lip gloss or shave your whiskers, gender specific obviously (although I could have done both on Prednisone!). It is important to be viewed as an organized, normal, intelligent individual with something really wrong that is making you really sick. I believe this and have experienced first hand the difference between being dismissed as a depressed and disheveled mess of an individual and taken very seriously as a pro-active sick person that is a force to be reckoned with. I demand effective treatment and answers out of my doctors. Yes I know Fibromyalgia is grossly misunderstood by the medical community but there are still some theories, some research, some knowledge of this illness and I want it shared and my treatment to lessen my symptoms. So if a hairbrush, jeans and lip gloss do this for me it is well worth the effort.

Looking better also leads to feeling better, even if just a little. Ever had the flu? You spend 3 days in bed sweating and sleeping, vomiting and more. And then that fever breaks. And the need to expel everything including water goes away. So maybe, you think to yourself, I am not so dizzy that I can stand up in the shower. And the second that water hits you and starts to wash the sick off, you start to feel a bit better. Exhausted, but better. This is kind of how I am feeling everyday. I am going through a particularly resistant phase right now. I am sleeping 12 hours a night, don't leave the house much, and am having a very hard time getting my motivation and organization back on track post-strokes, post-Prednisone. Yet the days I do take the time to clean up, makeup, and go somewhere or do something, I am not as down as I am when I sit in my apartment, barely leaving it to take the dogs to do their business, not really exercising or doing much to feel I look good. So I guess I am saying it is worth it to spend  some of our limited energy on ourselves. No, 5 shades of eyeshadow and 3 coats of mascara are not what I am talking about. But taking a little time each day to do clean up and fix up. And having one hell of a response in your back pocket to all those annoying know-it-all's that think if you care about the way you look, you must not be sick.

Thanks for joining,


  1. I can't seem to stop nodding in agreement, Leah. I know I always feel better about myself after I hide the dark circles under my eyes with some make-up and add some color to my face. Thanks for another great post!

  2. You said what I have been trying to say! well written and spot on!I just couldn't go out a mess just so ppl know I'm ill. I have to spruce myself up, That is who I was before I got ill, and who I am now underneath all the pain etc
    Pamela-Marie ,UK

  3. I definitely agree with you. I can spend days in my sweats, dreading a shower because of the dizziness I will feel afterward. But when I finally get up the motivation, I always feel a million times better. We don't have to look sick to prove that we are. Good blog, Leah. :)