There are many times I wonder how different my life might be had I met the right doctor 12 years ago. I’m not saying I’m not happy with where I am now, but I do feel my quality of life over the last decade would have been substantially better. Instead, I endured a revolving door of doctors, tests, and medications – all while having no explanation for my symptoms.
I cannot remember the number of primary care physicians and gastroenterologists I’ve seen. I’ve had more blood tests, CTs, MRIs, upper endoscopies, and colonoscopies than I’d like to admit. I was in and out of the ER for pain so often, I joked with staff that I should have had a punch card. More often than not, those tests came back normal. At one point, I was even told that my pain was likely the result of anxiety, and that I should go to therapy. Although I did not appreciate essentially being told my symptoms were in my head, I was so desperate for answers that I went. Don’t get me wrong, I was able to work through a lot of the trauma from my marriage in therapy, but despite healing those wounds, the pain and fatigue continued.
I tracked my food consumption, my sleep patterns, and my stressors. Sometimes there was some correlation, but most of the time there wasn’t. There were days I had so much pain and fatigue that I couldn’t function. I would miss work, was unable to keep up with life responsibilities, and even lost jobs. I lived in the realm where I knew something was wrong, but I often wondered if maybe it was all in my head. Each time I took a different approach to figure out what was going on, I ended up being re-victimized by the health care system. I felt as though I was being gaslit by the very system that was created to help me.
If tests came back normal, more tests were ordered. If those tests came back normal, an educated guess was made as to what was going on. Medications were prescribed. If those medications didn’t help, more were prescribed. I felt like a medical guinea pig and all the while no one took the time to truly listen to me. I was very open with my providers regarding the abuse I sustained at the hands of my ex-husband. Yet, no one considered the medical impact that abuse could have had on me.
Twelve years later, after visiting my second neurologist who actually requested a scan of my spine, it was apparent I did sustain an injury to my neck. He then referred me to pain medicine – the appointment that if I had, had it 12 years ago, would have changed the trajectory of my life. Within 10 minutes of being in the room with me and asking the right questions, she diagnosed me with fibromyalgia – a disorder that commonly causes unexplained pain throughout the body and severe fatigue. It is also common in people who have experienced abuse. After 12 years of searching, I finally had an explanation for everything I was going through – and it wasn’t in my head.
I am now on medication for my fibromyalgia and as a result, my pain is being well-managed. I continue to struggle with severe fatigue, but now that I understand why it is happening, I am more kind to myself and have learned to listen to my body and give it the rest that it needs. Yes, I had the strength to continually push for answers, but I shouldn’t have had to. Doctors need to be just as aware of the physical consequences of abuse as they are of the mental consequences. These consequences extend beyond bruises and broken bones. This awareness has the power to change the lives of their patients who have experienced abuse. No one should have to wait 12 years for answers. As survivors, we deserve better. The medical system needs to do better. Our lives depend on it.
Photo: Flickr – Thomas Anderson