What is your diagnosis day? Mine is April 1, 2007.
There was irony in finding out I had a life-altering, incurable illness on April Fools’ Day. I accused my doctor of playing a prank on me. I thought he was joking.
Before my diagnosis, a few medical professionals told me I was obsessing about my symptoms and should get a hobby. After seven months with no answers for my worsening symptoms, I began to believe I was overreacting to some minor health problems. I never imagined I had a rare illness.
I felt relieved to put a name to the group of weird symptoms I was experiencing. Finally, I had proof that it was not all in my head. I smiled when my doctor said, “I’m so sorry, Suzanne. You have Churg-Strauss syndrome,” or CSS.
I was elated. All the medical testing had been helpful. It had proven I was sick and could begin treatment.
Now known as eosinophilic granulomatosis with polyangiitis (EGPA), CSS was a disease I had seen during an internet search 24 hours before my doctor’s call. I knew it was rare and severe, but I believed I could take a few pills and everything would return to normal. That feeling of joy faded in a matter of minutes as the seriousness of my disease set in. My life was about to change, and my future was uncertain.
Many people with rare illnesses can tell you the date, place, and time they received their diagnosis. I often think about my diagnosis day and wonder if I should celebrate or grieve. Over the past 14 years, I have done both.
I celebrate that I am no longer in symptom limbo, and we have a name for my cluster of symptoms. In the past 14 years, there has been a lot of research into ANCA vasculitis, resulting in effective treatment guidelines and longer life spans. My doctors plan to keep my EGPA quiet and use several proven medications when unexpected issues happen. I celebrate every anniversary of my diagnosis.
I also grieve on my diagnosis day.
On April 1, 2007, my whole life changed. I can no longer be carefree about my health. Sometimes my life revolves around doctors’ appointments, medical tests, and treatments. I had to redirect some of my hopes and dreams. Due to my limited energy, I mourn the loss of relationships.
I can become caught up in grieving and forget to celebrate the life I have. I am still walking on this Earth and making a difference in people’s lives.
After my diagnosis, I did not return to my old routine. I had to find new inner peace. I am deep in memories every April 1 and work on balancing grief with celebration. I will give myself time to cry, but I will also eat that piece of celebration cake that I buy every year.
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.