Friday, January 27, 2012

You Sure Don't Look Sick

Oh if I had a buck 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 for the most part, you can keep your looks...but it's also one of the worst. When I first became sick with "mystery illness" I was looking better than I ever had in my entire life. Six months prior I survived a severe bout with pancreatitis that nearly killed me. I subsequently changed my lifestyle and dropped a ton of weight, fitting into a size 8 for the first time since  my wedding. I stopped drinking alcohol and started eating whole, unprocessed, unrefined foods. The clean lifestyle really showed on the outside. So when all of a sudden I started complaining about the intense burning and searing in my legs, like my bones were separating from my muscles, and feeling like I was crushing myself when I walked, presented with debilitating fatigue, the response I received was skeptical at best. I did have a tiny bit of credibility due to pancreatitis being a "real" medical condition, but that quickly went away as no problems ever revealed themselves. I saw doctor after doctor and was given a clean bill of health and some anti-depressants. Man I wish I knew back then how common that practice was! 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 whose mother had Fibromyalgia, and like a good son he was going on to specialize in Rheumatoidology. He is the one that began the long and exhaustive process of ruling out any and every possible illness that shared my symptoms. This went on for about a year, culminating with the last test, a MRI to rule out Multiple Sclerosis. When the imaging came back negative I fell apart. Nothing was wrong with me, but I could barely move! My fear was real. Was I forever locked in a pseudo-livable world of sickness and misery entirely of my own fabrication? How could I get better if I didn't know what I was supposed to be getting better from? My doctor eventually ruled the diagnoses of exclusion Chronic Fatigue Syndrome but had no treatment, no cure, no way to manage it, nothing! My faith in modern medicine crumbled, as did my faith in myself, a future, and everything else in my world. As sickness overtook me life was abound with 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 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, that damn MRI alone cost me $2,000 with insurance. I gave up my corporate job and was working 30 hours a week. My life was starting to swirl down the hole... But it was during this vacation, sleeping on an air mattress in a tent on the shore of the lake, that full-blown Fibromyalgia knocked me on my ass. I ached and throbbed everywhere and could not sleep. A switch flipped on in my brain and nothing would shut it off. I spent six days 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 I was noticeably sicker. A few months later I totally broke down and thus began my seven months on state disability. Oh this is when it really got good...

Battling with my doctors to extend my disability when I could leave my house for only 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 whiny former life of the party. None 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. Family landed into town so I brought in food from the Italian grocery. 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 broke down, I cried. I isolated myself and typed a journal because my right hand and arm were paralyzed in pain and I could not write. I got mad, sad, enraged and deflated. If there was ever an emotion to be felt, I felt it. Along with unbelievable pain from my body simply doing what bodies do, pumping blood and breathing air and flexing muscle. It all was on fire. During this phase I grew up. I realized this was my fight and mine alone. And I had to win. While the love and support of those around me was crucial, I was the one who had to figure this one out. I stopped expecting the approval and belief of anyone other than a few who supported me unconditionally along the way. I was able to tap into a lifelong, deep need for acceptance and throw it away. It was during this time I became determined to get better, as well. More focused than ever to surround myself with positivity and improvement. I stopped listening to those that ceased to understand me. I did not care if I was doubted and did not absorb or retain criticism. I set out to find answers and find health, everyone and everything else could go to hell.

I was successful, my friends. One step forward and often three steps back, but I just kept going. I exploited my "healthy" look and used it to my best advantage. I prissed myself into the appearance of a calm, rational, believable, level headed, confused sick person that knew what I was talking about and demanded action. Projected an attitude of hope and perseverance. Many still looked at me and doubted, and do to this day, but that is their problem, not mine. Because one day I had some semblance of my life back, and  some control over my body again, and the sweetest revenge was simply not caring enough to say anything at all.

Thanks for joining,

This blog was originally published on 8/15/10. It was a hard climb back from the bottom. I became who I am because of it, though.


  1. Wow. Yeah. Sometimes I would really like to make the people in my life read your blog posts ...

  2. I just love your attitude! I am getting to that point finally. Thank you for your blog and for posting this just as I needed to hear it. :). You are one strong woman and I find strength in your story.

  3. Thank you for giving me your thoughts. For once I don't feel alone & crazy. I would love to copy this & email it to all of my so called friends. Leah you're an Angel in disguise. I want to THANK YOU FOR BELIEVING IN ALL OF US!

  4. This but you don't look sick thing really annoys me because people never say it to some-one with Diabetes, Heart disease, Asthma and many other conditions that are not generally apparent to the "man on the street". It is like one more nail in the coffin of the idea that those of us who suffer from FM/ME/CFS are malingerers.
    I am sure I am not alone in that in some really dark periods I wish I had RA or something else that people can see so I don't have to try explaining myself again to another person. Thank you for your blog and I hope you are having a spoonful day xxx

  5. I have been going through this since at least 2010. I think I have FM. My rheumatologist said he thinks FM but did every test to rule out RA. I see him in 2 weeks. All tests negative. I have every symptom of FM. I work full time in the operating room as an RN. I dont know how I can keep this up. He gave me Trazodol in the meantime for sleeping, it only helps somewhat. I am up every night several times. I am exhausted and ache everywhere. I feel hopeless.