I was 26 years old, and I felt a crushing pain in my chest, and sure that I was having a heart attack (the pain was like an elephant sitting on my chest)–I asked a friend to drive me to the hospital. When I went through the doors of the ER, I was so sure I was having a heart attack that I didn’t think I was going to make it out of there. I was rushed to a bed, where they hooked me up to an ECG, and found…nothing.
After a series of other tests to make sure I wasn’t in the middle of a pulmonary embolism or something else serious, they gave me a couple of Valium and discharged me. I still had the tremendous pain–the elephant sitting on my chest–but thanks to the Valium, I no longer cared.
I’ve spent two decades with this disease, gotten a whole lot of education, and done even more research, and I finally found the answers. The symptoms of Tietze’s Syndrome are similar to many other diseases, and very few doctors know about it or can diagnose it. So after years of doctors telling me I was nuts, and recommending antipsychotics, or antidepressants for what is essentially a bizarre case of arthritis, I know they were jut not educated about this disease. Even after finally knowing what it was, I had no way to treat it — it’s so rare there is no big pharma research into it at all.
Finally, after all my pain and doubt, I discovered how to diagnose it, and how to manage the disease, and I feel vindicated. Empowered. Hopeful.
And I think to myself, there are other people out there — people with these symptoms who feel like they are crazy (because their doctors tell them they are!), who are living with a disease they can’t fix, but which causes agony in spurts. People having what feels like a heart attack a few times a week, and not only not being able to fix it, but being told there’s nothing to fix.
But I’m here to send a different message:
That’s my story, 20 years in the making, and it feels damn good to finally be able to tell it!
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