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?
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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.
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Victoria Brady
Well written. Hit home in so many ways. Thank you
Monica Sleep
So very appropriate.I find I am saying things that are not appropriate at times when I hurt so badly.Ant the Dr asked why I was crying so often when it was pure depression and I am better now.Waiting to know if or when I get another Rituxabam infusion as I am off methotrexate but increased prednisone and put on 35lbs Unwanted!
Kristen Mejia
Thank you , I too have granulomatosis with polyangiitis ( GPA), what an apt reminder that I am not alone . My lioness made me legally blind , for an artist this had not been easy but I ve come to embrace the simple things I can still do . Again thanks , Kristen Mejia
Christine White
I was dx with wg in 2005 as well and you're right...our journey had only just begun. Dr. Lee, from the VF expert doctor list, saw me in 2006. He told me then that the way I was at that moment was the best I'd ever be. I thought he was crazy. I knew I'd improved, but he was right.
I have never been as well as I was that day in 2006. Every day we take meds; they turn into weeks, month, years and decades of toxic drugs in our system along with an immune system STiLL trying to kill us.
The only peace I usually find is that this hell will one day end. I'm at peace with dying, too. I'm not afraid anymore; and I've lost so many vascies over the past 16 years. They were the warriors! I continue to take MTX once a week, feel sick for 48 hours, take plaquenil that may make me blind, but at least I'm not in agony all the time with inflammation pain. I still take prednisone. I was never able to get off it. I'm also someone that reacts horribly to pred over 10mg. Then there are the meds I have to take for hypertension (thanks pred) and borderline diabetes. LOL I would not wish chronic illness on my worst enemy. I'd be a sadist if I did that.
Pat Fox
Thank for you for your post. You give me hope towards an enriched life as I have just been diagnosed with GPA/Wegeners February 2021. Knowing what has caused so much pain, I can look forward to managing the treatment. And living life.
Bonnie Schaefer
I know exactly how you feel. I’ve spent many nights in the hospital in pain from Wegeners. I live in fear of what might come next and feel that no one in my life (with the exception of my wonderful wife) understands what I go through on a daily basis. I too have difficulty getting out of bed in the morning. I don’t have the energy or passion for life I had before this disease. I’m sick of all the drugs needed to keep my symptoms at bay, doctors appointments, etc. however, it helps to know I’m not alone by reading your post. Thank you!
Robin Roy
I thoroughly enjoyed this story. I can relate to every word. I don’t know what I’d do without my son (23), my horses & dogs. They all seem to know when I’m experiencing a stressful time. My husband on the other hand doesn’t get it & stays in his own world.
yvonne
Written beautifully. I can relate to every word. You are not alone on this new life journey, but together as a strong group of people we can over come.
Claudia
Liked your article! Interesting conclusion that each stress is temporary....and we need to find our own way to deal with it, to cope, to overcome it.....been diagnosed in 2019 and still having a hard time coping with things unfortunately. And the worst part of all is that it affects the ones close to you, in a different way than it affects you .....
EM chisholm
Hi
After two years of being treated with cell cept for glomeruler nephritis, I was in remission for a couple of years. Then my tests results showed I was now out of remission and had developed ANCA VASCULITIS. I HAD NO OBVIOUS SYMPTONS AND STILL DONT. I GET TIRED AND NEED A NAP. THATS ABOUT IT. no dramatic symptoms like others in this column.
After I recovered from the COVID shot, I felt better than ever. I was napping afternoons but now no longer require a nap.
After reading the above, it seems it’s a disease of always waiting for what happens next.
I am getting Rituxin infusions every 6 months. So far this is keeping everything in remission.
It seems there’s a question about how long it’s ok to stay on this. It seems to work but what happens if I come off?
Do most people feel fine like me? Do symptoms develop over time?
I don’t understand what to expect. Any comments…?
Thank you.