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What My Desperation for Doctor Validation Taught Me About My Body

Many of us who have chronic illness have been to our fair share of doctors and specialists. I know I sought out mental health professionals because I was fully convinced the symptoms I felt were in my head. I went to rheumatologists, primary care physicians, pain physicians, physiatrists, hematologists, and orthopedic surgeons. If I did not like the physician, I would go to another physician in the same field for second and third opinions. Somehow, I ended up at Cleveland Clinic out of desperation in hopes of categorizing my symptoms under a diagnosis.

Cleveland Clinic validated my feelings and symptoms. They diagnosed me with several conditions. I was validated to no end, which provided relief as well as fear. I was fearful for two reasons: the rarity of my conditions and the simple tests physicians looked over. How was I going to be able to trust in these doctors who could have prevented, to some extent, my conditions?

We can’t dwell on what we could have done, but we do need to realize we are the specialists of our own body. No one lives in the body we live in. No one experiences the agony or extremity of symptoms our body is in. No one has the right to say, “it’s all in your head,” or “it’s not that bad,” because you are the expert. My desperation led me to the realization that I am the expert on my body. When people say “you’re too young to be sick,” or “you look so healthy,” I remind myself I am the expert of my body.

You have to advocate for yourself. You cannot settle for doctors who are quick to relate your symptoms to a mental health diagnosis or vice-versa. Do not give up, and find doctors who are willing to not give up. My desperation for answers helped me realize I know my body better than anyone. If something does not feel normal, trust your instincts. Do not let symptoms get worse. You deserve to know why your body does not feel right. No matter what, remember you have to live with the symptoms on a daily basis, not others.

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Thinkstock photo by Katarzyna Bialasiewicz