The Mighty Logo

Learning to Live With the Symptom No One Else Has

The most helpful emails in health
Browse our free newsletters

I had already been ill for six years when I woke up from one day to the next with a neuropathy that could not be abated for the next 24 years.

I felt so terrorized by this pain, it wasn’t until over 15 years after it took root in my body that I could focus my attention directly enough on it to actually describe what it was like.

The best analogy I can give is if you had a purring cat lying on your stomach, and each “click” of the purr was a pain signal that shot up from the abdominal cavity, through your throat, then “landing” at the frontal part of your brain causing severe intractable head and eye pain. It has a sound to it, which is how I knew early on it was a form of electrical/neuropathic pain; as the signal hits the brain many times per second it vibrates my eardrums, the sound having a purring, whirring or rumbling quality. I experience it as if there was a drill or a gun firing upwards from my GI, or a live electrical wire has been cut there and is still shooting sharp sparks of fire aggressively through my midline into my head.

I existed captive to my pain for 24 years. With the countless treatments and therapies I tried in all those years, many dozens of practitioners and many hundreds of appointments and tests, no one ever found a way to turn off the switch. And I couldn’t turn it off with my own passion and commitment to recreating homeostasis. Not with healing diets, breath work, yoga or exercise. Not with dedicated meditation practice, visualization or any other kind of mindfulness approach. I couldn’t stop the fire from raging. I was never permitted to rest. There were no answers anywhere as to why I was being tortured by my own nervous system. It’s bizarre now to realize this broken neurological circuit has fired its hot pain billions and billions of times since the fateful day it began.

Diagnosed with late-stage Lyme and co-infections in May 2016, almost three decades after the onset of my illness, I was able to put the pieces together and understand that the infections had attacked my central and enteric nervous systems — creating the chaos by which the nerve pathways were firing. This knowledge was humbling and enlightening, but could not provide comfort. Three years of comprehensive treatment for my disease have led to gaining the ability at last to settle into periods of time when this pain does not consume me. My long journey has entailed a significant degree of isolation, not only due to the myriad impacts of the relentless pain, severe chronic fatigue, sleep deprivation, depression and anxiety on my quality of life, but because of the fact that I’ve never encountered anyone who has heard of anything resembling this strange and terrible symptom that I have. Lyme and Co infiltrated my physiology at the weakest points, manifesting in ways that were fitted to my own uniqueness and complexity such that I was given an experience I would never wish upon anyone.

Certainly and naturally, I am not alone as a sufferer with this wish. You may be struggling with a symptom so bizarre and brutal that you believe no one else could ever comprehend it. And your belief may very well be correct.

For all of us with excruciating symptoms that make many of our daily moments so formidable and ruthless to cope with, of course we must utilize all of the resources we have at our disposal to seek relief. I know I’m like millions of others with chronic disease who cannot choose to walk away from the dance of seeking to identify causes and effects, maintaining courage in the face of unanswered questions, treating the symptoms through ongoing experimentation, finding a measure of appropriate balance between determination and distraction, as well as resting from the dance to the degree that our blessed hours of reprieve will allow.

Through all of the healing work and support required for me to reach this stage of recovery, I’ve finally arrived at a place where I can be in relationship with my pain; I now understand that my compassionate relating with the symptom I could not bear is essential for me to be free of it. The pain is a phenomenon inside my body but is not what I am. What I am is the therapeutic energy of unwavering self-compassion and respect within me, which expands as I develop ever deeper levels of intimacy with the pain. I devote this powerful, beautiful energy to my healing and my growth. I become my own healer.

Getty image via Marina Zaam

Originally published: June 18, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home