Sunday, August 15, 2010

"But You Don't Look Sick"

Oh if I had a buck for every time I have heard those words since 2005 I would have no problems paying my medical bills now! One of the best things about this disease is you can keep your looks...and one of the worst. When I first became sick with "mystery illness" I was looking better than I ever had in my entire life! Glowing and radiant, I had just survived a severe bout with pancreatitis and had dropped a ton of weight, fitting into a size 8 for the first time since my wedding. My hair was long and blonde, sporting $200 highlights, and I was at a point in my professional makeup artist career where I really knew what I was doing and could coax the most out of my looks. I had stopped drinking alcohol entirely and was eating whole, unprocessed, unrefined foods and the clean lifestyle really showed on the outside. So when all of a sudden I started complaining about the intense burning and searing feeling of my bones separating from my muscles in my legs and my abdomen on its way to explosion or implosion, coupled with debilitating fatigue, the response I received was skeptical at best. I did have a wee bit of credibility due to pancreatitis being a "real" medical condition, but that quickly went away as no problems ever proved themselves. I saw Dr. after Dr. and was given a clean bill of health and anti-depressants (aren't we all?). But I had been depressed before and knew this was something else entirely. I would research a new doctor, gathering up my faith and hope and symptom lists and medical records, and come home sobbing because short of something new showing up in the same round of standard blood tests, I was as fit as a fiddle!

The first doctor to believe me was a resident in clinic at UCSF who's mother had Fibromyalgia, and although he was not willing to give me that label immediately, began the long and exhaustive process of testing to obtain that diagnosis of exclusion. I kept up with him until we left San Francisco and will forever be grateful for his sympathetic ear and inquisitive mind. The process went on for about a year, culminating with the last test, a MRI to rule out MS. Multiple Sclerosis scared the shit out of me, for I knew it could indeed be life threatening, but when the imaging came back negative I fell apart. WHAT THE HELL WAS WRONG WITH ME??? Was I forever locked in a pseudo-livable world of sickness and misery entirely of my own fabrication? How could I get better if no one could tell me what was wrong? My faith in modern medicine crumbled, as did my faith in myself, a future, and every naysayer telling me to "get over it" or "it is all in my head" or "this is what lazy people do to avoid having to work". My doctor eventually ruled Chronic Fatigue Syndrome as the culprit, but had no treatment, cure, management, nothing!

My husband and I planned a long and relaxing camping trip to celebrate my birthday and our 5th anniversary. Money for anything more had already been spent on medical bills. It was during this week that full-blown Fibromyalgia knocked me on my ass. I ached and throbbed everywhere and COULD NOT SLEEP. I spent 6 days at our beautiful lake-front campsite in a daze of exhaustion, floating on the surface of the glimmering water, internally burning in the radiant sun, roasting marshmallows around a cozy fire utterly confused. My husband was so supportive but had no idea what to do. We returned from our hiatus and about a month later I totally broke down and thus began my 7 months on disability. Oh this is when it really got good...

Battling with my doctors to extend my disability when I could leave my house for maybe 20 minutes at a time was hell. Getting my family to understand was darn near impossible. My friends dropped off, having nothing in common with a sick and whinny former life-of-the-party. My largest challenge was with my parents. They love me so, I know, but neither of them had ever been through chronic illness and each suggestion they threw at me was met with a hyper-sensitive and often hysterical reaction. They just did not understand, did not get it. They came to visit right after Christmas and I catered dinner in. Cooking? Ha ha ha. But just setting the table and opening a bottle of wine sent me over the edge, and no one was grasping how bad this really was.

I finally reached a point where I had to take a break. Remove myself from the endless suggestions and doubt. I sent email to everyone I knew, informing them I was "on retreat" and would be back in communication in 2 weeks. That was quite possibly the best thing I could have ever done. I sat in my apartment and pondered. I wrote, I thought, I spent so much time alone and was really able to get inside my own head and make some progress. I was able to put my parents in proper perspective and see it was truly their love and concern driving their grasping attempts at offensive advice, but their human inexperience saying the wrong things. I believe during this time I finally "grew-up". I stopped looking for mommy and daddy to wave their magic wand and fix everything. I stopped expecting the approval and belief of anyone other than a few handful that had supported me unconditionally along the way. I was able to tap into a life-long deep-need for approval and throw it away! It was during this time I became determined to get better, as well. So when I came off  "retreat" I was clearer and more determined than ever to surround myself with positivity and improvement. I stopped listening to those that teased me about just not wanting to work or condemned me for "being ill" when nothing was wrong. I stopped caring if I was doubted and did not absorb or retain criticism. I set out to find answers and find health!

It can be done, my friends. 1 step forward and often 3 steps back, but keep on keepin' on! Exploit your "healthy" look and use it to your best advantage. Fluff and primp and press yourself into the appearance of a calm, rational, believable, level-headed confusedly sick person. Project an attitude of hope and grace and perseverance. Many will still look at you and doubt, but that is their problem, not yours! Low expectations of others leads to no disappointment...and one day when you have some semblance of your life back, and you have some control over your body again, the sweetest revenge is simply not caring enough to say anything at all.

Thanks for joining,

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