What I learned along the way and how I found my way out.
After my diagnosis with an unknown, mysterious illness at the age of 26, I was sicker than I ever imagined I could be.
After years without answers, I accepted that the doctors I expected to help had given up. I was on my own.
I had entered an alternate reality and the only way out was to go through it.
I started by researching the immune system as it seemed mine had gone haywire. As a teenager I loved to read and write. When it came to science and biology I was never really interested. It just wasn’t that interesting to me. My high school biology teacher reminded me that even writers needed to know the basics of biology. I often asked why.
I loved languages, stories and history but none of those things were going to help me get well. I knew that in order to understand my body, I needed to go beyond my skill as a writer and become a scientist.
Guess who had the last laugh…
For the next twenty-five years I would delve into the deep waters of science looking for answers to what the heck had happened to me. I often thought of my high school biology teacher.
Like Alice in Alice in Wonderland, I fell down a rabbit hole and stumbled into a disorienting alternate reality, one in which the pursuit of answers and solutions led only to bizarre circumstances and disturbing revelations.
During the first five years, in addition to my research about the immune system I decided to learn everything I could about diet, exercise and sleep. I started with the basics thinking I might find an easy answer, but there were no easy answers as to why I was unable to walk more than 1000 feet or stand for 5 minutes without becoming so dizzy and fatigued I had to lay down.
Although fatigue was one of my worst symptoms, sleep was not restorative. On the rare occasions I slept through the night, I would wake up feeling like I hadn’t slept at all.
Walking across a room, I felt like a prisoner dragging a ball and chain. My muscles ached as if I had been pushed to the limit by a drill sergeant. Every step was an effort.
Even after I returned to work part-time as a marketing consultant, I suffered from bone crushing fatigue, muscle weakness, joint pain, and low grade fevers. I thought if I could maximize the little energy I had through proper diet and restful sleep it may help.
I cut out carbs, long before the idea of doing so was popular.
I became vegan before it was considered a healthy alternative.
I found a physician who utilized integrative therapies including vitamins, supplements, Chinese herbal remedies, and acupuncture.
Exercise was out of the question, but I tried that too. I was able to do three bicep curls with a 2 lb. dumbbell before my thinning arms were unable to continue. I stretched every day, as if I was getting ready for my daily run, but went nowhere.
I kept a journal of my symptoms in the hopes that I would uncover a pattern or a link to something I was doing, eating or encountering.
I examined my environment and considered exposure to toxins when I worked in an old mill building or the proximity of my house to the airport. Could the constant exposure to airplane jet streams have triggered something? Did the old mill have mold?
During those early years, I read dozens of books and hundreds of research papers on a variety of topics. Each one led to the next, and a possible theory for what had happened and what continued to keep me ill. Doctors had speculated about a virus so I took a crash course in virology too.
When COVID began, I was surprised how much I understood about the virus, how it was mutating and the premise of an RNA vaccine.
I also studied mindfulness and learned the power of meditation. I came to understand the importance of quieting my mind which enabled me to think more clearly and tune in to my intuition. I tried yoga but that was too strenuous. Meditation became my new friend.
My journals were another life line, filled with details, notes and thoughts about a trigger, a symptom or a cause. They would outline my illness for more than twenty years.
No Rally, Just Silence
One of the hardest things about living with a chronic illness is the loss of connections. I didn’t see many friends because after the first year, most didn’t know what to say or do. They were living their lives. I lost touch with my colleagues too. I understood, but it didn’t make it easier.
Most difficult was trying to understand why my illness was so different from someone diagnosed with a known illness. When compared, both lives had been cruelly interrupted without certainty of a good outcome, yet the comparisons ended there.
I read stories of friends and family rallying around a cancer patient. Meals cooked and delivered. Rides provided to appointments. Fundraisers started to offset the financial burden.
When you’re suffering from a mysterious illness with no name, no cause, and no treatment, there’s no rally. There’s just silence.
The silence became deafening. Social media was nonexistent at the time so finding and connecting with others in a similar situation wasn’t an option. I depended on myself and my parents who had been a support from day one, but the emotional and financial toll was growing.
Without viable treatment options, every new therapy was ‘experimental’ and not covered by insurance. While I had saved money while working, my savings didn’t last long without a job and I had to pick and choose the therapies I could afford to try.
When most of my friends were getting married and having children, I was struggling to get well, work part-time and maintain some semblance of a life.
Life as an Outlier
There were many disturbing revelations during those early years. I had no idea there would so many more to come.
I learned that physicians, who took an oath to ‘first do no harm,’ had no problem doing nothing. I was considered a ‘difficult patient.’ Not difficult because I was defiant or belligerent, but ‘difficult’ to figure out.
Being the difficult patient is like being a piranha in a sea of goldfish. No one wants to see you.
It was quickly apparent that physicians didn’t like to be challenged. I was grateful for the few who were willing to have a dialogue and readily admitted that science had not caught up with my illness.
I learned that the cleanest diet could only improve your health so much if you had an underlying issue that was yet to be uncovered.
I also realized that alternative therapies such as acupuncture had a definite place in healing, but it was not a silver bullet.
I accepted that it was easier to be alone than put myself in social situations that would exhaust me for days on end.
I wondered if I would ever date again, let alone get married and have children, something I had always hoped for.
I realized that health insurance was great to have if you had a ‘normal’ illness or disease. If you were an outlier, it didn’t matter. You were on your own.
Time Stands Still
Days became weeks and weeks months. By year four, I began thinking of my life in terms of “before illness” and “after illness.”
The old me was gone, replaced by a new shadow of the person I once was.
It didn’t stop me from enjoying basic pleasures like reading a book for fun (instead of learning about the role of the central nervous system), cooking a healthy meal, taking a walk with my dog, or joining family on a vacation to Maine.
Each of these activities gave me a glimpse into the possibility that I could resume some normalcy.
Thanks to former colleagues, I was given the opportunity to work when I was able and gradually resumed full-time employment later that year at a small advertising and public relations agency. I was thrilled to be using my mind for something other than medical research. I’ll never forget the owners of the company who gave me the chance to work my way out of the rabbit hole.
I slowly began to improve, although my symptoms never disappeared. Most nights after work would start with a power nap. I rarely made weekend plans because one day had to be reserved to rest if I was going to get through the next week.
In year five, despite my intuition telling me I wasn’t quite ready, I accepted a full-time position as a Marketing Manager at a tech company 40 miles from my house. I had received many inquiries from recruiters over the years, but the longer I was out of work, the fewer opportunities I had. I couldn’t pass it up. I knew I was ready for the job and couldn’t wait to manage a marketing team. I also needed the financial security. I just wasn’t sure my body was ready.
I jumped in hoping for the best. I could see the glimmering light at the end of the tunnel despite the nagging symptoms that continued.
Every few months I would have a setback. If I got a cold, it turned into a flu-like illness that lasted two weeks. If I got the flu, I was down for three weeks or more.
I got by using every sick day, vacation day and personal day to either rest, recover from a setback or go to a medical appointment. After years of lost time, I wasn’t thinking of a vacation.
It was a tradeoff and I was just grateful I had come so far.
I started to believe the worst was behind me and the best was yet to come.
After years of research I settled on the belief that my immune system had been targeted like a bullseye by an archer. If the archer was a virus, I may never know its name.
I followed every lead like an investigative journalist. I just didn’t have a story to file.
I never stopped searching for answers or exploring new theories because the symptoms never stopped and my intuition kept reminding me that my illness was still with me.
I wanted to live a normal life, but I was happy to live a partial life.