Living with chronic illness changed my programming
I used to keep health matters private — but not anymore
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We are all programmed in many ways: by our upbringing, our education, our faith and beliefs, our life experiences, and even our diagnoses. Changing my programming to become an empowered rare disease patient and advocate didn’t happen overnight.
Long before I was diagnosed with any rare disease, including angioedema, I was a sickly child. Every year, from October to March, I would have rotating bouts of tonsillitis and strep. Even though I probably would’ve benefited from having a tonsillectomy, our family doctor disagreed. I was therefore programmed to just live with it, suffering through elementary school. My attendance was low, I missed out on extracurricular activities, and I did a lot of makeup work.
I was ill so often that it became part of my persona. Even though I felt horrible most of the time, it was just a part of who I was. I tried to downplay my illness and didn’t talk about it much. My family was very private — what happened at home stayed at home — and that included health challenges. Even among friends and extended family, I stuck with the program of privacy and didn’t mention my medical issues.
From silence to advocacy
That mindset continued into adulthood, and I didn’t really discuss private family struggles with friends or colleagues. Then I was stricken with Lyme disease in 2005. The illness was life-altering; I was bedridden for almost two years during my treatment and recovery, which meant it was no secret. By the time the diagnosis was changed to chronic Lyme, now known as late-stage, I knew my beliefs had changed. Needing support, extra help, and mobility aids forced me to admit that this was long-term and now public knowledge.
That illness and the change in my programming followed closely on the heels of the adoption of our daughter Leah the previous year. Little did I know at the time that this shift would become the hallmark of our future. Leah’s health journey has been even more dramatic than mine. During our battle for her diagnosis, my stance on discussing personal health issues shifted yet again. I was more than just a mom and caregiver; as we fought for doctors to believe us and treat her, I became a patient advocate and a diligent record keeper, logging symptoms, medications, reactions, testing, and hospitalizations.
By the time I arrived at my hereditary angioedema diagnosis in 2023, I had been reprogrammed into a fierce rare disease warrior. I felt empowered to self-advocate, press my doctors for answers, and try various treatments.
These days, I encourage others to stand up for themselves and take control of their own circumstances, whether that means speaking up about physical or mental health issues, voicing personal or professional concerns, asking for help, or even just saying no. Life is too short and complicated not to make the best of it. My new programming feels more authentic than ever before. I have faith that whatever life hands us is for a purpose, and I am focusing on how to use it to get with the program.
Note: Angioedema 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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