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Why I No Longer Trust Doctors to Make All the Decisions About My Care

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One of my earliest memories takes place in a hospital, where I was getting an endoscopy performed to determine what was causing my stomach pains. I was 6 years old. I woke up on a gurney – groggy, but hopeful that the doctor had found something. “Did you find anything?!” I asked. “No, you little liar,” said the doctor. I think he thought I wouldn’t remember this statement as I was coming of off some heavy sedatives; however, I have an excellent memory.

When the doctors at the children’s hospital were unable to find the cause of my stomach pains, they tried an array of medications on me. I was a human experiment. Some worked a little, and some made me worse with severe side effects. The doctor’s full conclusion was that I was making up my symptoms to get attention, as my mother later told me. My mom argued with the doctors, “What 6-year-old lies in bed crying from pain and is constantly having diarrhea?” This was the moment I realized that doctors don’t know everything and sometimes are unable to help their patients.

Fast forward several years, and I go to school to help people recover and manage various diseases and disabilities. My empathy for struggling was vast, as I had been sick for most of my childhood. I was eager to apply that empathy to becoming an Occupational Therapist. I loved working with people to help them to engage in meaningful activities. I worked in hospitals, early intervention centers, home care, schools and a neurological outpatient clinic. I was now a medical professional, on the other side of illness as a provider. I met great doctors, nurses, teachers and other therapists. I was able to treat people the way I was never treated as an ill child.

I never thought I would become sick again. I was treating patients with fibromyalgia just as I was newly diagnosed. It was terrifying, seeing the various degrees of pain and struggling. I was determined to not let myself get that sick. Eventually, I had to tell my co-workers that I had fibromyalgia. They were supportive therapists who tried to help me manage my symptoms and accommodate me. Despite my efforts of research, modifying my diet, acupuncture, physical therapy, etc., pain in my body and severe fatigue took ahold of me and I was unable to work. It was devastating to lose the career I loved.

I turned to doctors with hope to find a “miracle” drug that would make it so I could work again. That drug for me was Lyrica. I thought it was the answer to my prayers. I was able to go back to work part-time. Unfortunately, the benefits of Lyrica only lasted for six months. The doctor then titrated up the dose for effectiveness, and I was slammed with the side effect of suicidal ideation. I say slammed, because it was a night and day difference of feeling the need to die. I immediately called my doctor. Her nurse said, “This isn’t my problem. You need a psychiatrist.” I explained to her that suicidal ideation is a side effect of Lyrica, which was prescribed to me by the doctor in her clinic. She dismissively told me to go to the hospital for suicidal ideation. At the hospital, they said I was having difficulty adjusting to chronic illness, and I needed to enter an outpatient day treatment program. I went one day to the treatment program, where you sit in a hard chair all day. The following day I was in so much pain I was unable to walk. I had to drop out of the program as I was told I was not a good fit due to the severity of my acute pain. Still, no one suggested going off of Lyrica, switching medications or prescribing a medication for suicidal ideation.

Every day was a battle to survive. I told myself, “These feelings are just the effects of the drug, it’s not how you really feel and it will pass.” I then saw a psychiatrist who put me on a very low dose of an SSRI. Soon after, I began filling the toilet bowl with about two shot glasses of blood after every bowel movement. The SSRI helped with the side effect of suicidal ideation, but gave me another side effect. I called my doctor immediately, hoping to switch my medications or change the doses. I could tell they were annoyed that I was calling again. The response was, “This happens, give it time.” This nightmare lasted for six months.

This is the point when I remembered my poor medical care as a child and said to myself, “No more! This is not normal to have all of these extreme side effects, and I need real help.” I remembered that in cases of chronic, mystery illness, one has to be his or her own advocate. I found two new doctors, a primary and a specialist, who were willing to listen to me, order tests and provide care. I often wonder what would have happened to me if I didn’t switch doctors. Would I have died by suicide, or developed colitis? It took over a year of my life to recover from the effects of these drugs and poor medical treatment. My doctor gradually took me off of the medications, and has been providing me treatment with little to no side effects.

So often I hear stories of people with fibromyalgia “sticking it out” with his or her inept doctor and being sick or bed-bound for years. I am lucky I was able to find a good doctor quickly and change my care plan. Although I am still battling the illness, I don’t think it will kill me. Suicidal ideation and filling the toilet bowl with blood are serious side effects that could result in death. To think they were dismissed is disturbing. In the midst of a crisis it is hard to fight for better care but well worth it.

I want people with fibromyalgia and their caregivers to know you have the right to question your doctor and ask for help. If you are not receiving help, you need to go find someone who will help you. If you are treated poorly by a doctor, in that they are passing judgments by calling you a “liar” or “crazy,” then you need to go elsewhere. Oftentimes the traditional medical model focuses too much on curing an illness. At this point, fibromyalgia doesn’t have a cure, which leaves doctors practicing under that model feeling inadequate. Most just don’t know how to help us. There are other models for wellness and methods of care such as holistic care, naturopathic or eastern medicine. Some places take insurance, while others may be able to accommodate their patients in other ways. The good news: there are options!

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Thinkstock photo via nuvolanevicata.

Originally published: May 15, 2017
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