Brave Is Not in My Vocabulary
I’ve learned countless new words since my diagnosis — phlebotomy, stenosis, biomarker, etiology, hemoptysis, to name a few. There are long strings of syllables for medications and treatment options. And various types of doctors with “-ologist” at the end of their title. Even the name of my disease is a mouthful: granulomatosis with polyangiitis (GPA).
Usually, this makes me feel proud that I am properly educated. I know my body and its scientific associations, and can make my way through a journal article understanding most of the content. It feels good to know what I’m talking about and drop fancy words into everyday conversation!
But there’s one simple word that bothers me when I hear it, even though it’s meant as a compliment. It’s not specific to my disease, and it’s only one syllable. It’s when people who hear my story say that I “must have been so brave.”
Nowadays, I’m comfortable with who I am, what I believe in, and what I stand for. So, when someone attributes a characteristic to me that I don’t identify with, it rankles in my head like a bur caught on hiking clothes.
The thing is, the word brave implies that there’s a choice to be made between courage and cowardice. But I wasn’t given the option to do anything except live with this diagnosis. I did what the doctors told me to do so that I could resume normal life, or as normal as it would ever be again.
When I wake up each day and perform necessary tasks like taking meds, measuring biomarkers at the lab, or preparing special meals with anti-inflammatory foods, that’s not bravery. It’s something passionless, more primitive. To me, it’s just survival. Brush teeth, wash face, take meds, eat healthy, get enough sleep.
I know brave is meant as a compliment, but it rings hollow.
Of course, the initial leap in vocabulary began at diagnosis. In 2005, doctors at the Cleveland Clinic finally pronounced that I had GPA, called Wegener’s granulomatosis at the time. It had been several months of struggle, and I was exhausted. To crawl out from under symptoms labeled “idiopathic” and stand atop a confirmed diagnosis should have been a relief. This now meant we could undergo a specific treatment regimen, which would slowly heal my body and let me reach remission in 2013. But I was almost too tired to care.
It’s been 17 years of this autoimmune lifestyle. It’s not like I’m taking pills and doing lab tests to prove anything to anyone. I’m doing it because it’s what I have to do, because my doctor prescribed it, because it keeps me alive. There’s no emotion or courage attached to these tasks. The functionality becomes routine. Brush teeth, wash face, take meds, get on with life.
Vasculitis affects every major decision I will make for the rest of my life — school, work, relationships, lifestyle, daily routine. The bravery isn’t in surviving — that’s just what we have to do. No, the real bravery comes in framing a good attitude. It takes guts to put a smile on your face when you know your chronic health situation is difficult. Even in remission, there is always the temptation to stay in bed. To avoid facing another stretch of waking hours in a nagging, limited, weak, and sometimes helpless body.
Brush teeth, wash face, take meds, make it through the day.
Staying upbeat is less like bravery and more like personal empowerment. It’s an extra feat of strength.
Physicians say that once you’ve been pronounced “in remission” from an autoimmune condition, there’s a 50% chance of relapse. It echoes with an apologetic confession: We have no idea what the future of your health will be. Because I was presented that statistic before even graduating high school, I grew up with this uncertainty as a part of life.
Brush teeth, wash face, take meds. Now look in the mirror and smile. Tell yourself that you’re going to be positive today.
For some people, the term brave is a helpful one. I prefer to replace it with fearless. Now that I’ve encountered and surmounted the challenges of vasculitis, I also label myself strong, positive, and persistent. Because after living half my life with this disease, there’s simply no room left in my psyche to be intimidated by the world.
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.