Why It Can Be Dangerous for Doctors to Misunderstand Chronic Illness

As I sit here in a blanket hole, recovering from violent heaving, I remember that relief is temporary and suffering is permanent. I know the actual saying goes the other way around – suffering is temporary, or something. But in my case, it really isn’t temporary, it is unending, a fixture in my life and now a core part of my identity.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I was brushing my teeth. That’s what set off my 10 minutes of vomiting stomach acid and heaving so hard my eyes hurt.

A little over two years ago, I had my first brain surgery. It was a decompression surgery for Chiari malformation. In the eyes and mind of my surgeon, it was a significant success. Many people I know have this weirdly black and white idea of my illnesses. I remember not long after my surgery, we found out I needed a second surgery, and someone commented on one of my photos, confused that once again I was having brain surgery. I get it though. If you’re healthy, chronic illnesses can be very confusing. It’s not just my friends and family who are confused by the chronic nature of my illness. It’s my doctors too.

When I still lived in Alaska, a psychiatrist almost killed me, because he didn’t understand the complexities of my illness. It’s taken me this long to even talk about this with anyone other than my husband and a few close friends. When I say he almost killed me, I do mean quite literally. I ended up in his care because my regular physician was unwilling to continue prescribing my much-needed medications. He hoped he could use antidepressants to “cure” all my symptoms (fatigue, pain, etc.). I was down to try an antidepressant because my Ehlers-Danlos syndrome causes depressive episodes associated with pain.

It started as an innocuous prescription of duloxetine. After a few months, it didn’t seem to be helping, so he added more duloxetine, now going off-label, and he prescribed some bupropion. A couple months later, I still wasn’t improving and so he decided to add amitriptyline. I was hesitant to accept a third antidepressant when I was already on two. In the appointment, he pressured me to comply and said I just needed antidepressants so I could feel better and exercise. Everything would be fine. I was naive then. I didn’t understand the chronic nature of my illness.

His misunderstanding of my illness almost killed me.

I went home. I took all my meds, despite the internalized shame I felt and despite my instincts telling me it was not a good idea. The next day, I didn’t feel so well. But I continued my medications as requested. By that evening, I had full-blown serotonin poisoning. I ended up in the ER, my entire body shaking uncontrollably, my heart rate above 180, my blood pressure dangerously high. It took days to recover. I had to immediately discontinue my antidepressants. The psychiatrist is fully responsible for almost killing me. I confronted him over the phone after I recovered. He ended up relinquishing me as a patient a couple months later, after he called me “fat” and “lazy” in an appointment and I told him it was unacceptable for him to talk to me like that.

This incident falls entirely on a bad doctor doing some bad doctoring; however, it’s important as patients we are honest about our reality and treatment expectations. It’s important to address the perception of chronic illness in society. Our families, friends and doctors need to digest the chronic nature of chronic illness. I realize it’s not easy to accept things we cannot control. But chronic illness/pain patients do it every single day. We have to. We need our families, friends, doctors and communities to join us in that acceptance. We need you on our side and we need you to understand. Misunderstanding our illnesses is dangerous. It weighs on our daily social lives, our humanity, our economic mobility and it can kill us.

Photo via ipopba on Getty Images