This post appears on The National Pain Report.
The beginning of my journey with illness is a story similar to so many others I’ve heard — female, prime of life, symptoms including what I call the 3-legged stool of chronic illness: pain, fatigue and memory loss.
Medical tests were inconclusive, negative, or alternating between the two. I saw the wrong doctors, who offered the wrong diagnoses and we all waited around for me to get better while I got worse. This process wasted a lot of time, in my case 7 years.
Finally I found a really good internist, a doctor who specializes in diagnosis. This is where I should have begun my search, but I’d never been sick, so I didn’t know.
I clutched his arm and said, “I know something is really wrong with me. I’m afraid I’m going to die before I find out what’s killing me. Please, help me find answers.”
He squeezed my arm, went to work and soon I had diagnosis #1: Interstitial Cystitis, a painful bladder disorder. He referred me to other practitioners and specialists, and they helped me find more answers. I became a grateful member of the “good doctor club,” that small group of dedicated, skilled physicians in a community who respect, refer and consult with each other. The good news for patients is that you only have to find one of them to get in the club.
In less than a year I had a poker hand of diagnoses and was well into treatment that finally brought my symptoms under control. I’m not saying they went away, but I was no longer getting sicker. In addition to IC, my rheumatologist diagnosed mixed connective tissue disease and fibromyalgia.
I decided to have breast implants removed and learned one had ruptured, presumably years earlier, adding another piece to the puzzle of my worsening health.
All of my diagnoses were chronic conditions; poorly understood, difficult to treat and with no known cause or cure. Treatment, therefore, was trial and error, an ongoing experiment to discover what was driving my symptoms and what therapies, medications, combinations or doses might ease them. I made lifestyle changes to support my health. I learned to rest, reduced scheduled activities and spent more time quiet and alone.
I made the painful decision to leave my professional career and spent 2 years fighting to win my disability claim. Becoming an informed, engaged patient, accessing quality care, and demanding my rights from health and disability insurers became my new, full-time job.
One day I told my doctor, “I’m still sick, but I don’t feel the same way about it. I’m not terrified. I have some control. I’m learning to live with illness, to build a life that includes it, instead of fighting it all the time.”
We began to talk less about me, and more about the journey through illness. These conversations resulted in a book we wrote together. We believe patients experience illness in evolving phases, which we call Getting Sick, Being Sick, Grief and Acceptance and Living Well. We encourage physicians and patients to work together to recognize these phases and navigate them, mastering the lessons and skills inherent in each, so that patients might learn to live well, even if they can’t get well.
Then, just as I thought I had this new life all figured out, I began to have pain on the right side of my face along the upper jaw. I spent three futile years replacing fillings, enduring root canals and even undergoing sinus surgery, but nothing helped. Finally, and again, a wonderful internist listened to my desperate plea for relief and said, “I think you have Trigeminal Neuralgia.”
He called his favorite neurologist in the good doctor club, asked what she prescribed for the disorder and gave me a 2-week prescription. “Take this,” he said, “if you get better, go see her. If you don’t, come back. We’ll keep searching.”
Two days later I made an appointment with her and learned Trigeminal Neuralgia is known as, “the worst pain known to science” and “the suicide disease.” She offered what she hoped would be effective treatment, but once again, no cure.
A rolling tsunami of grief and self-pity threatened to drown me. I had to go back to the beginning—Getting Sick, Being Sick, Grief and Acceptance, yearning for the Living Well. For a while, I found my place of peace and stability again; but as my other symptoms improved, the facial pain got worse. Any increase in my heart rate was a trigger, along with brushing my teeth, heat, cold, talking, vibration, wind and, of course, stress.
I came to understand very clearly why this was called the suicide disease. My husband and I went to the University of Pittsburgh Medical Center, where they treat many trigeminal neuralgia patients. They recommended radiating the nerve, essentially killing it, but that didn’t feel right to us.
I met with a brain surgeon recommended by my neurologist. After a lengthy interview he said, “I think you have a vein pressing against the nerve and I believe I can fix it with surgery.”
I waited a month before scheduling the surgery, which was successful. I was off pain medication in a year and, as a bonus, all my other symptoms improved as well.
Now, three years later, I am taking only two medications, one for IC and another to help control the dizziness of Meniere’s disease, another card added to my poker hand of chronic conditions.
I have a functioning brain and memory, as much as one could expect from a 66-year old! I have energy, more than I have had in decades. I don’t have global, widespread pain. After years on opioids I take no pain medication stronger than Tylenol.
My story begins like so many others, but for me it ends like a miracle, a gift. I didn’t expect to get so much better, and I don’t know what all helped me. As a student in the School of Whatever Works, I tried everything.
I write this story to offer hope to other struggling patients. There is always the possibility that even chronic conditions can improve over time, research can reveal new pathways to understanding and new treatments will be developed. The IC medication I am on today did not exist when I was first diagnosed. As evidenced by my surgery, cures are possible.
Time, good care and lifestyle changes can allow healing to occur. Make peace, but never give up hope.
Joy H. Selak lives Austin, TX. with her husband. She is a patient advocate and co-author of You Don’t LOOK Sick! Living Well with Invisible Chronic Illness.