This time last year, I couldn’t get out of bed for more than an hour. Each week came with more symptoms, constant migraines, fatigue, joint pain, poor balance and cognitive difficulties among them. For four months, I traded in date nights and my son’s soccer practices for doctor’s appointments and blood draws. Nurses often took so much blood that I wasn’t allowed to stand up afterward. No one wanted to deal with a fainter. I’d watch the needle go into my arm and wonder if I’d ever feel better. Then I’d head home and collapse into my bed or the bathtub, too drained to enjoy a meal or carry on a conversation.
I couldn’t help but worry. How was I supposed to advocate for the care I needed and make sure I got an accurate diagnosis if I could hardly speak in complete sentences? As I struggled to find answers, I learned four important lessons about a patient’s role in solving a mystery illness.
Lesson 1: Notice the toll of physical pain on your mental and emotional health
After my mystery illness showed up, I lost the ability to make it through a day, and then an afternoon, and then an hour of caring for my children. Nearly any activity, from reading a book to writing an essay, came with surging pain somewhere in my body. At the same time, I experienced symptoms of previously diagnosed depression and anxiety more acutely than I had in years. I often tried to get by without pain medication, just in case relieving some of my discomfort might inadvertently mask clues about my health. But when I forced my body to forge ahead in pain, my mental health suffered too.
“Illness triggers fear and anxiety first and most,” says Anna Yam, a clinical psychologist who specializes in medically unexplained symptoms. “Over time, persistent anxiety takes its own toll, leading to fatigue, difficulty with attention — patients will describe this as a memory issue — irritability, sadness and depression, and decrement in functioning across domains of life.”
When you’re so inundated by warning signs of a health problem that you can’t tell which symptoms are mental and which are physical, it’s easy to give up searching for an accurate diagnosis. Talk to your doctor about the symptoms you’re experiencing, whether you believe they’re physical or mental. Information about changes in your mental health may not lead your doctors to all the answers, but it can give them a fuller picture of what you’re going through and help them care for you holistically.
Lesson 2: Establish a shared language for describing pain with your doctor
“I mean — I don’t know!” I stammered to one of my neurologists. “I’ve had babies! I have no idea what number to give you for a migraine and full-body pain. I can tell you I can’t take care of my children and that I can barely breathe after walking up a flight of stairs.”
“The pain scale is different for everyone,” he replied. “But it can be consistent for you. You’re not functioning. I think that’s a 10.”
I wasn’t happy about the high pain score I assigned to the drilling in my left temple, but my doctor’s clarification helped me understand the numerical scale better. I could establish what a 5 meant for me and explain it to my doctor, giving him a clearer picture of what I was struggling with.
If the task of quantifying pain makes a patient feel uneasy, it might help to remember that describing how pain feels is often as important as determining how much it hurts.
“Although we ask about the pain scale ‘number,’ I believe most physicians and other practitioners would agree that one of the most important aspects of pain in terms of reaching a diagnosis and finding the best treatment option is the character, or quality of, the pain,” says Anneliese Cuttle, medical director of the Emergency Department at the University of Tennessee Medical Center. “For example, is it aching, burning, pressure-like, or sharp and stabbing? Knowing what the pain feels like helps us determine if it’s more likely to be a pinched nerve, muscular pain or something else.”
That’s not to say it’s always easy to describe pain qualitatively, either. If a patient thinks poor pain communication is interfering with a diagnosis, it’s worth letting the doctor know.
Lesson 3: Keep records
“It is very difficult to distinguish between physical symptoms stemming from the presumed underlying disease and associated emotional stress,” says Yam. “Patients are rarely able to make the distinction, and in many cases, there is no meaningful distinction, especially when it comes to chronic pain.”
Patients often treat new symptoms like clues they’ve been waiting for, Yam explains. But putting too much emphasis on new symptoms can actually hinder progress toward a diagnosis. Rather than fixate on each new symptom as though it’s the final piece of the puzzle, Yam encourages patients to focus on recording all symptoms so that doctors can interpret their observations.
Cuttle advises chronic pain patients to keep a symptom journal that answers questions such as:
- What time did the pain start?
- What were you doing when it started, and for a few hours prior? Had you just eaten, and if so, what? Had you just taken a new medication?
- How severe was it when it started? Did it start gradually or suddenly?
- Did it radiate anywhere? In other words, did you feel it anywhere else in your body?
- What did it feel like?
- Did you have any other symptoms that coincided with the pain, like nausea or sweating, or the urge to urinate or have a bowel movement?
Lesson 4: Advocate for yourself in writing and with direct requests
Two months into my ordeal, I discovered through my own research that I had 19 symptoms of Lyme disease. To make the case for Lyme testing, I wrote a three-page letter to my doctors with citations, a symptom list and a recap of my medical tests. Within 24 hours, my PCP had responded to my missive, sent via the patient portal, with a phone call scheduling Lyme tests.
In the end, Lyme wasn’t the answer. But my thorough, persistent self-advocacy created momentum that helped me move toward a diagnosis faster than I would have. Keeping records empowered me to provide my doctors with as much information as possible, which made it easier for them to pursue answers on my behalf. While forcing yourself to document pain isn’t the most uplifting exercise, it gives you something to point to if you find yourself fighting for access to medical tests or exams.
Ultimately, the Big Clue was a blood pressure reading that plummeted, instead of rising, when I went from lying down to standing up. Doctors had previously checked my blood pressure while I sat up. But it wasn’t until I saw a naturopath during month four of my mystery illness that someone took my blood pressure with my body in multiple positions. The blood pressure reading pointed the naturopath to a diagnosis of a collapsed adrenal system. Some doctors use phrases like “adrenal fatigue” to explain this hard-to-nail-down condition, while others remains skeptical of the idea that adrenal glands can even become fatigued. The diagnosis, controversial as it may be, led me to the treatment I needed.
During the four months I spent looking for an answer, I sat on countless exam tables, had my nerves shocked by electrode needles, and struggled to read an entire children’s book to my two sons, who couldn’t understand what was happening to their mother. The lessons I learned along the way helped me live as full a life as possible in a body wracked by pain. They also gave me a sense of agency during a time when my body seemed to be calling the shots. I couldn’t heal myself, but I could make sure that any conversation about my health included my voice.