We must avoid comparing ourselves with others with ANCA vasculitis
Even if we share a diagnosis, no 2 people are exactly alike
It’s hard not to compare ourselves with other people living with ANCA vasculitis who have benefited from medications and treatments. Comparing is human nature — and the cause of much suffering. It’s particularly hard when we’re experiencing a flare or side effects of our tough medication regimens. Seeing people with the same disease going about life seemingly without any cares or concerns can be painful.
In reality, the experience of living with ANCA vasculitis is all over the board. In my immediate world, I know of:
- a person with eosinophilic granulomatosis with polyangiitis (EGPA) who, despite taking Rituxan (rituximab) and Fasenra (benralizumab), must also take 10 mg of prednisone to keep the disease at bay
- another person with EGPA who is not taking any medications and doing just fine
- a person with microscopic polyangiitis (MPA) who has severe lung damage and is being monitored for a double-lung transplant
- someone who has so much kidney damage from before their diagnosis with MPA that they will forever be monitored by a nephrologist
- a person with granulomatosis with polyangiitis (GPA) who was able to go from 80 mg of prednisone to 0 mg because of Tavneos (avacopan), but has to closely watch their one remaining kidney, which was functioning at 5% upon diagnosis
- another person with GPA who has spent so much time in the hospital because of chronic, recurring infections — a result of immune depletion — that they might have a wing named after them
- someone who was able to go off prednisone because of Tavneos and is now on Rituxan only
- a person who is managing EGPA with Nucala (mepolizumab) alone.
The list goes on.
Like a fingerprint, no two people with ANCA vasculitis are the same. It is a rough disease that requires attention and staying attuned and connected to our bodies. The burden is real and can impact quality of life. We cannot look away and pretend we don’t have a systemic disease that can rear its ugly head at any time. Though, truth be told, I want to do that — often. And we cannot let vasculitis control and consume us.
This can all be a fine line to walk. Author Toni Bernhard’s book “How to Be Sick” helped me learn how to navigate my disease and work to befriend it instead of making it the enemy.
What we must fight against is the natural tendency to compare.
While I am not Buddhist, I find great value in many Buddhist teachings. In Buddhism, the Pali term “māna” refers to our tendency to compare ourselves with others or against some idealized standard. It is the cause of much suffering, separation, alienation, and anxiety.
Instead, and just for today, each time my comparing mind creeps in, I will recite the Serenity Prayer: “Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”
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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