At some point, during the path of chronic illness, both with mental and physical conditions, we “sufferers” hope for a magical cure. At first, it’s the search for the correct diagnosis. “If they can figure out what I have, then they can figure out how to fix it, right?” The average time from onset of symptoms to diagnosis for a patient with an autoimmune illness is 12 months- 5 years. That’s a long time to hope! And that’s just Stage One. There is temporary relief at this point; a validation for the myriad of seemingly disjointed symptoms that have displayed themselves over the years. I remember thinking, “finally! Someone is listening.” But with the complexity of autoimmune disease and chronic conditions comes the challenge of finding the right combination of treatment modalities to match the exact manifestation of the disease in your particular body.
Stage Two begins once the diagnosis is in place and the march of treatments commences; this one doesn’t work, this one mildly helps, oh, found one that works for these symptoms, but not those… There comes a point when many doctors say, “I don’t know what else I can do for you.” God, this used to be so frustrating! Until I realized that the medical professionals feel just as frustrated at not being able to fix me as I do at not being able to be fixed. At this period of time, I picture facing a crossroads between Stage Two and Stage Three. Many patients turn around at this point, and “re-do” Stage Two, perhaps with second, third, even fourth opinions; with extensive self-research; by participating in research studies; or by going to additional specialists for additional tests. There are many ways to travel the roads of Stage Two over and over again. I know I sure did. I felt I had to exhaustively map out this terrain; perhaps there was a secret curative tonic hidden somewhere? But, getting your hopes up over and over again about some new treatment or new doctor, only to have them dashed again, is extremely taxing, physically, mentally and spiritually.
Over the last few years I’ve started to move forward, onto Stage Three. Stage Three is the most challenging stage; many sufferers may never reach this stage. This is the stage of acceptance that there is no magic cure; no perfect “fix-me” button. It doesn’t mean I don’t keep my ear to ground, listening for new and innovative treatment options for my conditions. But I also don’t put all my eggs in one basket anymore. I know that I will always be in some level of pain. The truth is that my disease steadily progressed for the 5 years before it was diagnosed and treated, and that damage is irreversible. This is where acceptance comes in (once again!). By accepting these facts, I can focus my energies on managing my symptoms (rather than “curing” them), finding different ways to adjust my activities as to not exacerbate these same symptoms and developing coping skills to deal with them on a daily basis.
Last week, I had an endocrine consult for the first time. I explained to the doctor that I was well aware there is no curative tonic that he will miraculously discover in which to heal me. I just want to be thorough with my care, and if there is something awry that could explain some of my “excessive” symptoms (like this debilitating fatigue and waterfall sweating armpits!), it would be a relief to treat those concerns alone. He sat back and said, “You have a really grounded, realistic perspective on your disease. The majority of my patients come in here pleading for me to ‘fix’ them and become very agitated when I can’t. You have reached an extremely healthy level of acceptance and your attitude will serve you well in managing your disease.” These words were the healing tonic I craved. To be heard, to be acknowledged. He was adamant about the validity of my concerns, but was also honest about the (in)ability of modern medicine to treat them.
No one is questioning that I have life altering symptoms. But, there is only so much modern medicine can do to treat them (another solid reason to advocate for studies on women with chronic conditions!). The truth is that if I lived 40 years ago with Relapsing Polychondritis, I would have been diagnosed postmortem. Without the treatments available that keep me alive today, RP was diagnosed after one’s trachea had collapsed or the patient went suddenly blind or deaf. Even though I live a life of daily pain, how can I not have gratitude for the fact that I am alive to live it?!