FIGHTING FOR THE RIGHT DIAGNOSIS WHEN TOO FEW KNOW ENOUGH TO CAREPosted July 26, 2018
by Dulce H.
I once again found myself in the hospital. It was the fifth time in six years, and I sat in shock in the hallway as nurses passed me by. Since I was six I knew I was different. How many six-year-olds experience chronic pain and pass out? But doctors could never find anything wrong. Finally giving in, I went to behavioral health, and my nightmare began.
It started simply enough. I’m extremely sensitive to medications, so I fought against it. Unfortunately, my symptoms worsened, and I finally agreed to medication. That was my first hospitalization due to a bad reaction. I had been hospitalized for my gi symptoms, but I was surprised to be in a psych hospital. With new meds, I left the hospital. I didn’t feel better, but I felt numb, which was almost as good. I stopped feeling good or bad, the chronic stomach pain was there, but I didn’t care. My joints still hurt and I still had injuries, but I was numb to all of it.
A year went by, my second hospitalization. The drugs, I discovered, were too strong, and I was so numb I stopped caring for myself, stopped writing, stopped trying at work. I was nothing, a vapor in the air.
That year, I started with a new psychiatrist who told me I had bipolar disorder. I was astonished as to this sudden shift in diagnoses, but what did I know. She put me on five different medications and the hell began. My emotions were everywhere. For the first time, I had severe depression with hallucinations, suicidal thoughts, trembling, confusion, and then the ever-present numbness. I didn’t know who I was or why I was acting this way. I kept asking her whether this was normal, but she insisted it was the disease, not the drugs.
I grew worse, and multiple hospitalizations ensued. I hated life and was in abject misery. The last hospitalization came, and I was suffering from delusions, ataxia, and severe tremors. I couldn’t hold anything or walk on my own and suffered severe migraines. The doctor in the hospital said she had never seen anything like this. Right then and there, I knew this was the drugs. Despite my doctor’s objections, I went off all the drugs, and my symptoms improved.
A few months later, I was diagnosed with POTS, which also confirmed my hEDS diagnosis. Finally, I had answers and saw that there were solutions completely different than what I had been offered. Bolstered with my new information, I returned to behavioral health to explain my case and ask that they dismiss the bipolar diagnosis. They refused. Instead, they declared I should go back on the medication as they had never heard of POTS and weren’t convinced that this could be the cause of my symptoms. I gave them the documentation exhibiting proof of pseudo-psychiatric disease in POTS, but it fell on deaf ears.
I continued working with doctors trying to receive new treatment but was told over and over that EDS is not treatable and to go back to psych for help. My joy in finding a diagnosis was dashed.
With a correct diagnosis, I thought I would be believed, I thought doctors would be willing to help, but that didn’t happen.
Now, I pay out of pocket for a specialist and am continuing to fight against the mental health stigma through my HMO.
My dad once asked why I make a fuss, why I share online and let everyone know. I do it so that one day no one with EDS will have to suffer shame and embarrassment in a doctor’s office. So that no one will have to risk losing their job, friends, and comfort of loved ones because they aren’t believed. EDS is a real illness and deserves as much sympathy and understanding as any disease
After a particularly rude doctor accused EDSers of drug seeking, I sat in frustration. Is it because most EDS patients are women? If I were a man, would I have been treated this way? Maybe this war on opioids has made every doctor question a patient in pain. In fairness, though, I have yet to meet a doctor in my HMO system who had more than a passing knowledge of EDS or POTS. A “you’re just flexible” kind of knowledge as though that’s all there is. Without awareness, research and reform, those with EDS and POTS and many other diseases are doomed to be relegated to the realms of behavioral health, doped up and shut up until we give up, on ourselves, on others, on this world as we know it. And all because medicine believes rare and invisible illnesses aren’t deemed worthy of the same care as any other disease.
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