What It's Like to Be Diagnosed With Multiple Illnesses in Your 20s
There I was, sitting in my doctor’s office up on the examination table with my short legs swinging over the side while I waited on my doctor to read my lab results and explain what they meant. I finally get an explanation for the back and leg pain I’ve experienced since I was 9 years old. I would now know why my energy seemed to simply slip away from me unexpectedly. There would finally be a name for this condition that plagued me with daily pain, almost constant fatigue and an intractable melancholy I just could never shake. My doctor looked up from the thin pale folder with sympathetic eyes, knowing how many years I’ve had questions and gone through appointments with other mystified diagnosticians who sent me on my way with more questions, more confusion and less money than I had walked into their offices with. After one deep breath she says, “The test results show rheumatoid arthritis and I suspect you also have fibromyalgia.” She grabs a tissue as the tears began to instantly fall from my eyes.
Now I take a deep breath and shudder. My first words were, “So I am not ‘crazy.’ It’s not ‘all in my head.’ My pain shows up in my blood. My pain shows up on an x-ray. My pain has a name.” Oddly, first a wave of relief washed over me. Then I started to ask questions. I start to ask about what I should expect, my prognosis, the best and worst possibilities, how I should expect my life to change and treatment options. I ran headlong into this wall of information and very quickly my emotions overwhelm me and I crumple. I lean, tilt and almost physically fall as my sense of normalcy slides away. The doctor hands me some pamphlets and says to come back in a couple of weeks so we can review the rest of my blood work. I am in shock. I know this because I can’t find my way back to the nurse’s desk or the exit. A lab technician had to show me the way.
Thank God for cell phones and friends who are in standby for the aftermath of doctor visits… My best friend barely said “hello” before I dissolved into tears. One garbled sentence after sentence riddled with fear flows out. We both struggle to see the bright side or to find a silver lining. At least it’s treatable. At least I have health insurance. At least now we know there’s a diagnosis, a word for the pain, fatigue and unexplained fevers, the reason my joints ache every single day. That day changed every day that came after it.
As soon as I got home I started doing my internet research and saw that I could lose the use of my hands, my legs or even my sight from rheumatoid arthritis. I realized the digestive problems I have experienced since childhood are related to the fibromyalgia. I was relieved to find that those days when I had a word on the tip of my tongue all day but couldn’t remember it were due to the brain fog that comes with fibromyalgia. It finally made sense that my 28-year-old body felt so much older!
Along with relief came anger. This huge wave of anger washed over for every time I was told I was lazy as a kid, for every time a doctor told me to lose weight or that I was just stressed out. The anger grew as I recalled the countless hours of fear and anxiety I spent waiting in doctor’s offices. Being sick without a proper diagnosis or treatment makes you feel vulnerable and powerless in a way that can’t be expressed with words. Illness is as human a condition as any of us will ever experience.
Now, looking back at that day over a decade later, I know that no article, no blog post, no words from even the most educated and caring of doctors could have prepared me for the journey ahead. There are days when I am sick of taking my meds. There are days when I just want to dance and sway to one song after the other without worrying about my back, knees or hips. And there are days when I don’t make it out of bed and I am so grateful for food delivery. Yet I’ve lived my dream of moving to New York City and living in Harlem. I traveled through eight cities in Northern Italy while on tour when I was a back-up singer in a soul band. I’ve been married and divorced. I continue working in a field I enjoy. The diagnosis altered my life but it didn’t end it. Some days I limp. Some days I strut. But every day I slay!
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