Finding Peace Amid the Contradictions of Chronic Illness
Receiving a chronic illness diagnosis can be frustrating and full of apparent dichotomies. After years of searching for answers, a diagnosis is a welcome end, but it also signals a beginning.
The doctors pronounced my disease to be granulomatosis with polyangiitis (called Wegener’s granulomatosis when I first heard the term in 2005). Though I now had a name for what was plaguing me, a diagnosis didn’t provide the closure I craved. Rather than concluding an arduous journey, it showed me that the road continued ahead for miles — and that I’d be traveling it for life.
These types of conflicts would arise many more times over the coming years. Autoimmune patients don’t always “look sick,” but we are clearly unwell. Because the symptoms can arise internally — in my case, a pulmonary hemorrhage — it could appear to a passerby that nothing is wrong with me. The reality is, my body attacks itself from the inside, seemingly with no trigger. How can I appear to be doing so well, when my life is actually in grave danger?
The never-ending road ahead was full of contradictions. I needed to pause my work and my life goals to accommodate harsh treatment, yet somehow continue looking forward. I was told I was “fighting a battle” but was also immediately forced into acceptance — a white flag handed to me, whether or not I’d asked to wave it. I was cautioned to tread carefully but also enjoy life to the fullest. The discrepancies felt endless.
Doctors told me I had a 50-50 chance of the vasculitis relapsing at any time. “What kind of statistic is that?” I thought, bewildered. It took time to understand that the number wasn’t true math. It was a doctor’s way of saying, “We really don’t know your prognosis, so just be prepared for anything.”
It felt easier to accept that it would definitely come back than not know either way. But I chose to look on the positive side: After years of facing unanswered health questions, like a series of locked doors, this one, finally, was left ajar.
How are we supposed to live comfortably amid this mental disarray? My answer may not be the resolution that suits everyone, and it took over a decade to discover: Seek out stillness within the turmoil.
A chronic illness is a churning, unrelenting vortex of meds, lab tests, specialist visits, and insurance claims. Then there is the maelstrom of physical symptoms, which alone are sometimes enough to drain my energy for a day or more. (Never mind my prior list of duties if I can’t summon enough strength to get out of bed.)
But if I can peer through the chaotic fog and see beyond, however briefly, I can recognize the opportunity for peace on the other side. The calm after the storm. Relief from the stress, when I’ve done all I can do and can only wait. Or rest. Or accept it all and live fully, the best that I’m able. After all, I’ve learned that each new wave of stress is only temporary.
When tomorrow’s medical appointment causes me anxiety, I counterbalance that by calling up a friend to meet for sandwiches afterward. When I feel overwhelmed with household tasks, I reserve half an hour before bed to tidy up one room of the house and light a candle, creating a mental sanctuary. When my stomach is upset, I brew a hot mug of tea with fragrant herbs out of my own garden, engaging with the ritual to find joy and respite. And when the heaviness of my physical situation weighs on my emotions, I sit next to my dog and run my hands over his head and down his back, absorbing the calmness of another living creature.
There is peace within the chaos. Where do you find yours?
Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.