Friday, July 4, 2008

Voices From The Body Chronic: Diagnosing A Chronic Illness

Today's guest blog is from Sandy, author of the site Fighting Fatigue. More is about her at the bottom of this post.

When I first became severely ill with ME/CFS, I was only 21 - that was 18 years ago. Back then there was very little information available on ME/CFS and I was fortunate to be diagnosed by the second doctor I saw for my symptoms. The problem was he lost his medical license due to insurance fraud and I had to find a new doctor to treat my illness. That is when I started on the long and frustrating search for a doctor who believed I was truly ill.

While I suffered for many years, shed a lot of tears, and received a lot of really dumb answers from supposedly "intelligent" doctors, I always knew that I was truly ill. I think that is the important thing for undiagnosed patients to remember. Never forget what you truly believe and always follow your gut. I would have times where I would think that maybe it was just depression or maybe it was just from being overworked, but I continued to fight back and say that wasn't it. My instinct and what my body was telling me always won out over what the doctors were telling me.

It seemed like once I was diagnosed with one chronic illness, the ball started rolling and more health issues followed. Over the last 18 years I have been diagnosed with Fibromyalgia, Interstitial Cystitis, and Benign Essential Tremor. I have also had two foot surgeries for tarsal tunnel and both hands operated on for carpal tunnel. It has been a long uphill battle but I never give up. I refuse to let a doctor or anyone tell me what I have experienced everyday for half of my life is not real. I do have times where I get depressed but I always know that I was chosen for a special purpose. God wouldn't lay all of this on one person if he didn't feel I couldn't use it in some way. That is why a little over two years ago I started my Fighting Fatigue website to offer support, my personal journey, and the latest information available on ME/CFS, Fibromyalgia and Interstitial Cystitis.

Besides believing in what your body is telling you, it is also wise for chronically ill patients to learn as much about their illness as possible. It's okay if you know more than your doctor does about what's going on with you. Be willing to fight and don't just accept your illness. You have to learn to live with it but it doesn't mean that your illness has to define who you are. Always know that no matter how bad it seems, there is a light at the end of the tunnel if you just look for it. Have faith, pray a lot and reach out to others for support who understand what you are going through.


Sandy Robinson is a stay-at-home disabled mom who has spent the past two years faithfully writing about Chronic Fatigue Syndrome, Fibromyalgia, and Interstitial Cystitis - illnesses she has suffered from for almost 20 years. Sandy is the author of the popular website, Fighting Fatigue, and is also the author of two other health blogs: Chronic Health Blog & IC Disease. One of Sandy's goals through her Fighting Fatigue website is to let people know that being physically disabled doesn't mean that life has to end. She continues to strive and learn everyday new ways to deal with her illness, enjoy life, and share what she has learned with others.


Anonymous said...

You are spot on!
No one knows how you feel and therefore if the doctor can't find a diagnoses then it must not be...
how frustrating that comment can be......

We all know our own bodies !
Keep strong

Undiagnosed Illness