I have always been a sleepy person. My (adoptive) mom used to joke that I was boring because I slept for most of my younger years, even continuing into first grade. My teacher was a family friend and allowed me to sleep during class and make up work later. As I got older, I kept getting more tired. I managed to maintain the status quo for a while, but I was masking incredible pain and discomfort.
It wasn’t until after I became pregnant with a second child and was comfortably settled into a career that the levees began to crack. I was 26 years old and regularly sobbing in the morning before work because I was so exhausted. I used every lunch break to nap in the back of my Honda Pilot in a church parking lot down the street from my job. I almost always needed two hours, and my company never raised any concerns. I ended up quitting my job after the birth of my second child, ostensibly to care for my child, but also because going to work every day made me anxious and miserable. I just couldn’t swing it.
We live in an individualist culture that blames the patient for the disease. I internalized this and went on a 10-year quest to improve my health. I worked out when I wasn’t collapsed from exhaustion or wrangling small children all about town. I ate very well. I even opened a lifestyle retail store dedicated to health and non-toxic baby products. But my health kept declining no matter what I did, or maybe in spite of it.
I visited doctors. The first, Dr. Irene Enzensperger, was rather unhelpful. She was more concerned with the urinary tract infections I kept developing rather than my overwhelming fatigue. I left feeling it was all in my head. The next doctor, whose name I cannot remember, determined that my symptoms were a result of depression, and prescribed Prozac. At this time, I probably was dealing with a bit of depression, but it wasn’t affecting my life to a huge degree. The Prozac, however, set me on a course of destruction. I made decisions I don’t think I would have made otherwise, and it didn’t improve my symptoms. During this period, I was still working full time, so it was difficult to make it to the doctor for follow-up appointments and to learn more about the drug I was taking. I didn’t know it would be harmful to quit taking the drug cold turkey after a year. I went a bit crazy for a few months after that. The next doctors I approached with my problem were naturopaths. I had decided that Western medicine could not help me, so I delved into alternative medicine. Of course, their suggestion was that I improve my diet and lifestyle and reduce stress. Not only did they not accept insurance so every visit was $300, but the weekly Myers’ cocktail infusions and supplements that they prescribed were upwards of $600 per month. I never felt better and my health continued to decline. I then moved away from alternative doctors after experiencing no improvement. I went through a series of insurance changes where I would describe my symptoms to a new doctor each year and again receive no help. At this point, I was nearly 40 years old and my anxiety and depression were unbearable. Anxiety and depression will often develop with an undiagnosed illness, and I was well on my way to my first psychotic episode.
I was 40 years old. I was struggling to keep up with my daily life, including work, raising children, and being a wife. I was failing. The pressure was overwhelming. I had many unsupportive people in my life who added to the pressure. I tried to commit suicide in July 2019 after my in-laws made some really poorly-timed comments to my kids. I had another breakdown in September 2019 after a hurtful comment by my daughter. I desperately needed help. In January 2020, I entered a treatment facility for acute anxiety and depression. I was assigned a care team, and I would work for the next two years on becoming mentally stable again. The only reason I’m still here today is due to a psychologist named Stephanie. She validated my illness which did not yet have a name, and she helped me to understand my trauma. My doctor during this time, Douglas Chiriboga, was the most helpful doctor I’ve had. I word it that way because he was absolutely not helpful in any way. I broke down during many of our visits because I never felt that any doctor understood how bad my life had gotten. By now, I was only out of bed an hour per day, at most. I tried to maintain employment during this time, but I would have to hang my head out of the window on my drive home to stay awake and prevent myself from vomiting (Being upright makes me light-headed and nauseous. It’s called orthostatic intolerance.) I had to quit my job.
But I kept going to the doctor. I wanted to get better somehow, and this seemed like my only path. Getting to my appointments was like climbing Mt. Everest each time. I was referred out to a rheumatologist, a gastroenterologist, a hematologist, a pulmonologist…just so many specialists. I did all the tests. They came back normal every time. Stephanie helped me not to feel gaslit while I was going through the diagnostic process. I could easily start to despair and think that I was crazy. My rheumatologist seemed to sense that I was at the end of my rope and asked whether I was willing to do a series of imaging tests. I eagerly agreed. In October 2022, I was finally diagnosed with Ankylosing Spondylitis. I didn’t feel good about my diagnosis right away. That was certainly not a diagnosis I was expecting – I hadn’t even heard the name before. The prognosis seemed terrifying, and also it didn’t seem to exactly match what I was experiencing. My primary symptom was fatigue. Could this really be what had been causing me years of pain and discomfort? I didn’t quite believe it. But then I learned more about the disease and realized that it does match my experience more than I initially thought. I had to become an expert in this illness I never wanted, and I had to do it quickly. I learned that there are effective treatments that delay the progression of the disease and I may expect to live a full and healthy life for at least a decade (my life expectancy is about 68 years old). I will take it! So far, I’ve had about 8 weeks of treatment with Remicade, a TNF blocker. I have not experienced any improvement. This has been discouraging, but I’m still only about halfway through. If it doesn’t work, there are several other treatments I can try.
I hope this gives you a good idea of what the pathway to diagnosis for chronic illness is like in America. It’s not easy, it’s dehumanizing, and it’s monumentally difficult. It can cause you to doubt yourself, and it is easy to slip into critical depression. You are not alone, and if we all share our stories, it can only get better. Good luck on your journey to diagnosis.