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.
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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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Comments
Vandana
Dear Allison
I still say you are brave, strong, persistent indeed ! Not to undermine your feelings on being called brave. I feel it certainly takes a lot to think about one's feelings, and experience and articulate it this well. I am diagnosed with GPA for about six months now. Ever since, have been reading the posts here. I drafted few posts and responses, however discarded , not able to put my thoughts and feelings clearly then it of confusion, anxiety etc Initial months have been with weird feelings and turmoil. Now, as you said relate more to fearlessness
Time is a healer of the sorts. Being well informed is good to plan and manage things well. At times feel brave to read about it all, other times, just keep away thinking I will have it as it comes. Both worked for me
Wish bliss and fulfilment
Verna Mryglod
Hello Allison,
Thank you for sharing you journey with ANCA Vasculitis. I was diagnosed eight years ago with GPA after an unidentifiable rash throughout my outer body. I also have Rheumatoid Arthritis and Lupus that was diagnosed years before the Vasculitis which made the GPA difficult to detect. After labs and more labs my Rheumatologist had me try Rituxan infusions as needed. I'm not in total remission and have to infuse 4 times a year but I'm able to join the gym, have two strengthening classes a week and live a somewhat normal life. Rituxan saved the day and I'm so grateful for the life I get to live and to find purpose and joy in the process.
May the blessings be,
Verna
Suzanne Dep
I am loving all your writing. This article rings very true. We are not brave we are survivalists.
Carolyn Josten
Thank you for continuing to write, and for sharing some inner-struggles on behalf of not only yourself, but for those who choose to struggle silently. Thru you, we may begin to understand a bit more, which is always helpful:)
Penny Conners
I have been in the GPA war since 2008 and identify with everything you have said. It is what it is and you do what you have to do to live. Fearless is the best description of what you become in this fight. Putting the positive spin is the hardest part and is a fight unto itself. If you start thinking about all you lost, can't do, or what might happen in future, you'll never get out of bed and that does make us fearless! Keep up the good fight!
Greg Patterson
Hi Allison,
Thank you for sharing your experience and especially the very personal internal journey of one's soul. I'm just joining the club as I'm newly diagnosed in the last 6 weeks. Knowing that something just wasn't right over the last few months, then developing what initially presented as a severe sinus infection and quickly leading to the shock that what I actually had was a rare autoimmune disease has been quite a ride. I've always been a "glass half full" person and continue to hold onto this and God's strength. My current motivating verse is Isaiah 40:31 " for those that find hope in the Lord will renew their strength, they will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint". Not to preach, but I will conquer this disease and this and other positive energy , wife, family, medical team, and friends, is my "kryptonite". I'm a long distance runner and backpacker with a temporary hurdle. Yes, we all face so much unknown, but as you express, having a courageous and can-do countenance is perimount. As I begin this journey and new life I know I can find ways to help others and you have helped me today. Conquer On!
Thanks,
Greg
Michael Black
I've commented in a few places "I'm not fragile". It's onky 2.5 years for me, and it took a long time to get my.muscles back, almost going straight into the pandemic. I'm still pondering what it all means. I read other people's experience with the disease, and it seems worse than mine. I just never hot sick, and nkw Ihave two chronic conditions, the GPA and my kidney damaged by it, chemotherapy getting back to"good enough".
The doctor said on Wednesday that I'm in "remission", which seems a bit odd since there's no cure. She actually said things have been steady "for a long time" even though it's just been since April 2019.
We have a rare disease, but we're not alone. Not only can we be lumped with other autoimmune diseases, but oters are in the same situation of having drugs that compromise our immune systems. My June Rituximab infusion was postponed till mid-August, to make time for my second vaccine shot. And about 2 weeks later, our government said the immunocompromised could get a third dose. Won't do me good until about January.