My story began in the summer of 2011. I was 30 years old, had recently returned to college after a long hiatus, and was about to spend my third consecutive summer directing a leadership program for teens in a beautiful children’s camp nestled between two mountains in the Columbia River Gorge. I left my job early, before the children had even arrived, to attend to a family emergency.
When I left the Gorge that June, I felt physically fine. I’d struggled for years off and on with depression and anxiety, but had always been relatively physically healthy. My body was strong enough to climb mountains, and I had abundant energy. There were no warning signs, not even a sore throat- nothing that could have prepared me for what I would go through over the next few years.
It took a a number of weeks to notice my symptoms (or, rather, that my symptoms weren’t going away). When I returned home, I assumed that I had just picked up a bad cold or flu during my pre-camp training- not an uncommon occurrence in a residential setting with a bunch of new people. I took care of myself like I normally would with an illness of that nature: I rested, I stayed hydrated, I took it easy. After a few days, my illness would start to subside, but just as I thought I was over the worst part, it would return with a vengeance: headaches, a low-grade fever, body aches, nausea and vomiting. Eventually, it became clear that something was seriously wrong and I needed to see a doctor, so off to Urgent Care I went!
The doctor at Urgent Care examined me briefly, concluded that I most likely had a UTI, and sent me home with a prescription for antibiotics and instructions to return if my symptoms worsened. I was in the emergency room 48 hours later, where I was admitted for surgery to remove some endometrial tissue that was trying to murder my left ovary.
Emergency surgery is alarming, there are no two ways about that. The night before I was cut open, nurses kept waking me up and asking me questions like “do you already have children?” and looking at me with pity when I answered that I did not. My pre-surgical imaging revealed that I had a kidney possibly missing (WHAT???) and then not missing, just in the wrong place (WHEW! But WHAT??? Did you know kidneys could do that? I didn’t!). By the time I was ready to drift into anesthetized sleep for my surgery, I was thoroughly freaked out, but relieved that I knew what the problem was and I had a clear plan of action to solve it.
Unfortunately for me, that was not at all what happened. I healed from surgery, and don’t get me wrong- I did feel tons better than I did when I walked into the emergency room. It was my first major surgery, so as I healed, I assumed that everything was progressing normally. I continued to be plagued by pain, body aches and fatigue, but I figured that was just my body healing, and for the first 6 months, that was the feedback I got from my doctor as well… but as 6 months turned into 8, and then ten, and then a year, it became evident that my recovery was not normal. In an attempt to avoid more surgery and at the behest of a well-intentioned friend, I spent a third of my financial aid refund on nutritional counseling and supplements that were supposed to help even out any hormonal imbalances I might still be experiencing. My fatigue continued to get worse. I began experiencing severe abdominal pain again, and the nausea returned. I dropped my hours at school and started again with the doctor visits and testing.
Two years after my original surgery, I had a second, exploratory surgery that cleaned up adhesions that formed after the first surgery and some other minor problems that my doctor insisted should not be causing me so much distress, but she would take care of them just in case they were. That was my first experience with the “let’s throw everything at the wall and see what sticks” diagnostic method for mystery symptoms.
Early on as I was healing from my second surgery, it was very clear that things were still not normal. My vague body aches concentrated themselves in my lower joints and my neck. My fatigue only got worse. My school work suffered and so did my personal relationships.
I. Was. Miserable.
I was also increasingly frustrated. What was going on with me? Why was I still so sick and seemingly only getting sicker?
I would not have satisfactory answers to those questions for another two years. That was the beginning of my new life: a life of testing, baffled doctors, frustration, anger, tears, love, support, and all of the other experiences I had and lessons I learned while waiting for a name for what in the world was wrong with me.