The camera has never really been my friend.
From an early age, I learned to make myself scarce, if not outright hide, when anyone pulled out a Polaroid. All I knew is that the face that stared back at me from those blurry photos didn’t quite look right. The representation of me felt unfamiliar or foreign.
But this was different.
Sorting Family Faces
Sitting on the family room floor, I surrounded myself with photos featuring the happy faces of my children, friends, and family. Committed to finally getting the photos sorted and assembled into scrapbooks, I dropped them one-by-one into my categorized piles — children’s school trips, family parties, holidays, vacations, and more. Only a few included me and with a quick glance I quickly tossed them into a discard pile.
It wasn’t until I’d rejected more than a dozen or so that I caught myself. I decided to do a second review and soften my critical eye. I scanned my image looking for whatever it was that made it “discard-worthy.” It didn’t take long for me to see it.
The first one I viewed was from a Thanksgiving celebration. I had droopy eyes and looked as if I’d run a marathon. I instantly zipped back through time and remembered how my body felt. I recalled the rush to get the cooking and table preparation done. I had stomach problems before guests arrived and ran late due to extended time that I spent in the bathroom. My dull and distant-looking eyes said it all. “I don’t feel good.”
Viewing a different holiday photo, I saw dark-rimmed eyes and a feigned smile. I vividly remembered the intense pain in my back, neck, and shoulders that I experienced at the time. Another snapshot of a Halloween party recalled feelings of exhaustion from no sleep due to all-night-long leg cramps. Seeing my expression in a photo from a church mission trip brought back memories of severe hip pain. I remember worrying that I wouldn’t be able to stand all day and paint the new church we’d built — yet, I did.
Viewing pain, as a whole, was startling.
It had never entered my mind to think of myself as a “sick person.” Before this moment, I viewed each incident as isolated and unique. For the first time, I clearly saw that I had a health problem. While the symptoms seemed unrelated (pain, fatigue, insomnia, digestive challenges, headaches, vision problems, low energy, etc.) I could now literally see that I was sick far more often than I thought.
It was surprising to me since I never missed work and didn’t skip out on family commitments. I managed to cope and do what was needed, but these photos portrayed a story of a compromised life. I had no diagnosis, but from this point on, I could no longer pretend that everything was okay.
Sorting Symptoms for Patterns
After this event, my brain felt like a dog with a bone. I couldn’t let go of the notion that something was wrong. Something big. I constantly asked myself questions. Do I always feel sick in some way? When do I feel good? Is it only related to busy times such as holidays and family events? And, why do I have symptoms after fun things too such as parties, birthdays, and trips?
I had a lot of questions.
And, as a natural researcher, I knew what to do. I went to work investigating my symptoms and the events that seemed linked or tied in some way. As I documented these seemingly unrelated topics, I noticed a pattern or connection. I noticed that sometimes, my symptoms seemed to be minor and go away quickly. At others, they seemed to multiply and linger. (I later learned that these circumstances are called flares.) Focusing on the times when my symptoms were at their worst, I reviewed my personal and work calendars to look for clues.
I found many that surprised me. Trips to the doctor (taking antibiotics, hormones, getting vaccines, etc.) seemed to frequently kick off a period of increased symptoms. This was sometimes true for dentist visits, too. I also found a connection to seasonal symptoms. In general, I felt better in the summer and worse in the late fall and winter.
I also saw connections to increased symptoms after holidays, parties, and big events — although I didn’t understand why.
Piece by piece, I began to complete this puzzle. It took me many years to assemble a final picture of my health challenges, but I knew one thing for sure. I could see that many similar events and circumstances preceded a flare of increased symptoms. This meant that some (if not all) of my symptoms occurred as a reaction.
Patterns for a Purpose
I documented everything I learned and created a three-page spreadsheet. I listed symptoms, the circumstances before the symptoms started to appear, and how long the symptoms lingered. Some of my longest flares occurred after trips outside of the country, stressful family events, and periods of drama and challenges at work.
Looking at my list of symptoms as a whole, I finally made my own diagnosis discovery. My collection of physical problems seemed to fit within the diagnostic criteria for fibromyalgia. I saw a new doctor and presented my research. She was very happy to review my analysis and confirmed what I’d already feared to be true. She then said something that I felt was dismissive at the time, but now I see the wisdom.
She said, “This is one of those diagnoses where I’m not much help. Fibromyalgia is a 90% patient and 10% doctor thing. You need to tell me what you need, and I’ll see what I can do.”
Because I’d already traversed the bumpy road to research and discover my diagnosis, I took her words as a personal challenge. I decided to get back on the road of research to find my own path to recovery.
And, that’s exactly what I did.