Bravery beyond the diagnosis: Living fully with ANCA vasculitis

Piglet in the Winnie the Pooh series has a famous line: “It is hard to be brave when you’re only a Very Small Animal.” When I was diagnosed in April 2007 with eosinophilic granulomatosis with polyangiitis (EGPA), formerly known as Churg-Strauss syndrome, it wasn’t easy to be brave. Every medical test, procedure, and medication was new and scary. I wanted to crawl under my bedcovers and never come out.

I had two choices: stay home and miss out, or dig deep, find my bravery, and move forward. Finding my bravery was difficult at first. How was I going to be brave when going through all the testing, procedures, and uncertainty that a diagnosis of EGPA, a type of ANCA vasculitis, brings with it?

Yes, I had the proverbial pity party. Then I looked at my three children and decided I needed to be the best parent I could be. I needed to be brave and set an example.

Does bravery come quickly? No! I work every day to be brave in many aspects of my life.

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Moments of bravery

One of the bravest things I’ve done is to come out publicly about my illness. In the beginning, I hid behind a pseudonym because I was scared that my illness would limit job opportunities for me and my husband. It took bravery to come out, beyond my close social circle, with the news that I had EGPA; it took bravery to share my limitations. I don’t want to be known for my illness; I wish to be known for my accomplishments.

Realizing that EGPA is a chronic illness and doesn’t just disappear, I knew I’d have to be honest with the people around me, including employers.

I signed up and attended culinary school shortly after my diagnosis. It takes bravery to accomplish an item on our bucket list. When my hair started falling out because of cyclophosphamide, a potent chemotherapy drug, it took bravery to cut it short so it wouldn’t fall out in the teaching kitchen. No matter how awful I felt, I would attend my classes every day.

Sometimes I had to take a break to vomit in the bathrooms, but I always returned to the kitchen, determined to get my chef’s degree. When I had to drop out of culinary school just two weeks shy of graduation, I had to muster all my bravery to realize that my health was quickly declining and I needed to focus on that rather than culinary school.

Raising my children required me to be in the community despite my suppressed immune system. My kids needed me to attend all the typical school gatherings and support them. I learned to sit on the end of an aisle or in the back so I could quickly exit if I coughed or needed fresh air.

I also had to be honest with their teachers. They needed to know that my health situation could affect my children’s emotions and attitude. Because of my diagnosis, my children have become empathic to any child with disabilities or health issues.

Nobody thinks bravery is part of declining a social invitation, but it is. Listening to my body to decide which social activities I can do is important. It takes bravery to say no and spend the time at home taking care of myself.

Traveling is a passion of mine, and I’ve had to be brave and learn how to travel safely. I wear a mask, sanitize my hands, and see sites in the off-season to minimize crowds. I carry extra medication in case my travel gets unexpectedly extended.

Bravery didn’t come naturally to me; I had to dig deep within myself to find it. As you do the same, remember another quote from the Winnie the Pooh series: “You are braver than you believe, and stronger than you seem, and smarter than you think.”

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.