You Don't Look Sick
I have suffered from Lupus for over 30 years.
Dismissed by doctors
At some points, I thought I was losing my mind! The doctors wouldn't take the time to actually listen to me describe my symptoms. They sort of swept my complaints under the rug. Blamed my symptoms on the weather, on stress, on my job, on the fact that I was a mother of 6, etc.
One even told me "maybe you need to see a psychologist, you don't look sick. It might be psychosomatic.
I stopped complaining or trying to get answers after a while. Fast forward approximately fifteen years. I still suffered from the same symptoms I complained about for years. Except now, I had rapidly lost over 100 pounds, my hair was falling out by the fist full, and my body was covered in scars and open sores.
Diagnosed with lupus
Reluctantly, my PCP referred me to a Dermatologist, because even after testing "for everything" he could think of he still didn't know what was wrong. The Dermatologist ran tests and decided to do several deep tissue punch biopsies. The biopsies came back as SLE! Yep, I had Lupus.
I was immediately referred to a Rheumatologist, who also diagnosed me with Lupus. By the time I finally was diagnosed Lupus had already done a ton of damage. My kidneys, liver, lungs, joints, skin, scalp all were damaged. I cried for a week.
You don't look sick
The next time I saw my PCP, he apologized for not catching my symptoms and stated he "would have never even thought of Lupus. Not much is taught about it in medical school or in PCP seminars and continuing education. Especially since people with Lupus, like me, don't look sick."
Education is important
Since that point in time, I have made it my personal crusade to educate everyone I can about Lupus. I talk about it to every physician I meet, my family, friends, and even strangers on the streets. The way I look at it, the more I share my story, the more awareness will be risen.
Fighting for future generations
I also participate in experimental drug trials for SLE. These trials, won't save my life, but some do ease the symptoms. But more importantly, these drug trials may someday find a cure, not for myself, but maybe for my 2 children that have since been diagnosed with Lupus, and for future generations. Especially since they have recently found the gene that causes Lupus!
Being an advocate for your health
Just because you don't "look sick", doesn't mean that you are healthy. It simply means, they don't know what's wrong and don't want to take the time to listen, understand and investigate. You are your own Best Advocate for your health! Keep talking until you find someone to listen to you.
Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?
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