This weekend I was given an inestimable gift.
I got to be in a room of people who share my invisible disease, folk who have trod the path that I have and faced the same ambushes and pitfalls and can understand where I am without a word being said. I had not expected such a wash of knee-buckling relief and sense of homecoming. The embrace of camaraderie was strong, each of us veterans of nights of painful hell and days of frustrations and tears, thousands of battles fought within our own bodies under the silent skin.
In spite of the collective pain in the room, I got to see magic as futures for RA got created. The motivation for an end to this insidious and random disease is huge in every one of us, and when collectively harnessed in pursuit of that, it was beautiful to witness. Transforming.
As we dove into the world of Randomized Clinical Trials, the critical role of research in finding better treatment options became ever clearer to me. In truth, I had never spent much time thinking of the thousands of people that pour their life energy into finding ways to make me better, flares tending to drive me inward instead of outward and my notion of research being but a fuzzy image in my head of a lab coat, a syringe and a mouse. But in the end, all the researchers have is us, the patient body. Measuring our progress and setbacks in the face of their best attempts to help us is their best metric of success, and it became clear that we are the key to finding the best avenues for treatment. Without us giving feedback into the system, folk trying to find the best way to beat RA are just blundering in the dark. I owe it to myself and to the sufferers who may unfortunately follow me to do my piece in finding the relief we seek. If I just engage with any of the multitude of trials out there I can forward the standard of care for all. After years of feeling disempowered around my affliction, I finally feel empowered.
It wasn’t all goo and wonder. I was slapped in the face by realizing how much I had given up on myself. I had ridden into a rut of no insurance and failed regimen, and was content with pain management and grit-yer-teeth defiance. I had spurned the only avenue available to me for relief, and slapped the hand that was trying to comfort me. Many people are dealing with much worse and complex conditions, and with a lot less resignation and self-pity than me. I would hang my head in shame, but it would be more wasted time and emotion when there is so much yet to do.
I was made privy to the sharp end of the spear of Patient Advocacy and the passion that drives it, stabbing into the thickets of today’s reality to create a better future for tomorrow’s sufferers. It was a beautiful thing and I am honored to be included. Not just included, but handed a world of possibilities to live into at the perfect time.
I am awash with gratitude.
This piece was written after attending the first ever CreakyJoints Patient Governor Conference in Palisades, NY. Held over a weekend in September, the Conference focused on patient-based medicine and the role of research and Randomized Clinical Trials in finding better treatment options for us RA patients.