Being a Medical Anomaly

I never dreamed that one day wake up sick and I would never get better. 

My life hasn’t always been this way. I remember that I used to be a relatively healthy person. But to some degree, I feel like I’ve always had pain. As a kid, doctors always said that I just had growing pains. But as I got older, the pain got worse and worse. I had my first knee surgeries starting at 19 years old. 

Every time I would go to the doctor and explain what was going on, they would do lab work and run tests. And every single time, everything would all come back within normal range. Maybe occasionally there would be a result that was slightly low or high, but nothing to ever *worry* about. But when you’re a medical anomaly, normal isn’t necessarily your normal. For example, my normal body temperature is 97.4*. When I go to the doctor and it’s 98.7* that is elevated for me but to doctors, that is text book normal so don’t worry. 

At the age of 40, I finally found a doctor who listened. She sat down with me long enough to painstakingly go over my ENTIRE medical history…something that no doctor had ever done before. She was the first and only doctor I’ve ever had who was willing to actually take the time to consider that what was going on with me could’ve been something more than the typical or common ailments. After 5 years of tests and ruling out other possibilities, I was so tired of treating symptoms and being sent home. She listened and sent me to a genetics doctors who was the one who diagnosed my Ehlers-Danlos Syndrome.

It’s almost like, when they can’t figure out exactly what’s wrong, instead of admitting they may not know what the issue, most doctors will accuse you of faking it or being dramatic instead of investigating further.

Now, I realize that it can difficult to connect things like joint hypermobility, clumsiness, chronic nausea/stomach pain, and blurry vision. However, I do think that many doctors have become complacent. Doctors are taught in medical school, “when you hear hoofbeats, think horses not zebras.” But what happens when you’re a zebra, not a horse? Doctors are encouraged to NOT take the effort if they don’t easily know what the issue is.

It’s almost like, when they can’t figure out exactly what’s wrong, instead of admitting they may not know what the issue, most doctors will accuse you of faking it or being dramatic instead of investigating further. I had a doctor tell me that even though I was in pain, I had longevity in my family so I could plan on living a long life – just in pain. 

It’s like doctors don’t realize, understand, and/or care that their actions or inactions directly impact my quality of life. They don’t realize that their negligence to treat my symptoms cause me to be unable to work, which results in lost wages, which results in financial stress, which causes anxiety, which causes a worsening of the original symptoms and increased panic attacks…it’s a cycle that is the direct result of a doctors decision.

We spend our lives being told that doctors are here to help. They say they want to help make people’s lives better. But when it comes down to it, they don’t see their patients as anymore than a name on a piece of paper. The humanity of it has been taken away. 

There are treatments and medications that can improve my quality of life and alleviate some of my pain, but I am at the mercy of doctors to determine whether or not I am allowed access to them. There is this thing called an opioid epidemic where most doctors are no longer willing to prescribe medication that actually helps the pain in fear of addiction. I get it, but Tylenol isn’t going to cut it. 

We’re supposed to trust doctors to help, right? To listen to us and treat us, right?  But what about when the majority of the medical community fails you? Then what do you do? What are my options when I have no further options available to me?

Now, I’m not saying that ALL doctors are this way. Some doctors still care. Some doctors recognize you as an actual person. Some doctors won’t give up until they’ve found the root cause of the issue. But I haven’t found that here. Before we moved to Georgia, we lived in Colorado. The doctors I had in Colorado were some of the best doctors I’ve ever had. But here in Georgia, it’s a whole different story and it’s a shame. I have been told too any times that I needed to see a psychotherapist because this is all in my head. 

It’s a shame that people have to die to be taken seriously. My heart breaks for the number of people who live in agonizing pain because of doctors who won’t listen. 
I’ve heard doctors say, “don’t confuse your Google search with my medical degree.” To which my response is…don’t confuse your medical degree with the crap I’ve had to live with.

To all the people out there being ignored by doctors…you are your best advocate. Keep pushing and don’t give up until you find someone who will listen.

“It’s not just pain. It’s a complete physical, mental, and emotional assault on your body” – Jamie Wingo. 

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