I never imagined how being chronically ill would influence my future work.
I never could’ve imagined how much being chronically ill would shape my life when I was diagnosed with ulcerative colitis as a teenager. I never could’ve imagined that this diagnosis would be the first of many or how being chronically ill would influence my future work.
Truthfully, I was in denial when I was diagnosed with ulcerative colitis. I believed that there would be a magical pill to make being sick go away. I didn’t want to talk about it or for anyone to know that I had a disease. I just wanted to pretend like my diagnosis never happened.
So, how did I go from hiding my diagnosis from the world to running my own social media pages focused on chronic illness and disability?
As the years went by, I began to experience additional symptoms, pain, and fatigue. As of today, I have been diagnosed with ulcerative colitis, Ehlers-Danlos syndrome, dysautonomia, and chronic migraine disorder. I’m currently on the diagnostic journey to discover the cause of other unsolved immune system problems.
The additional diagnoses, hospital visits, and the increased impact of chronic illness on my life forced me to confront the way that I had been denying the validity of my experiences. The sicker I became, the more I realized that hiding it, burying it, and pushing through it was not a sustainable solution.
That’s not to say that I don’t understand or empathize with anyone who keeps their chronic illness to themselves. It’s very personal, and the judgment, stigma, and doubt around being a chronically ill person can make it hard to open up.
But hiding such a large piece of yourself from others can get very lonely. Dealing with the frustration, grief, anger and sadness that so often come with chronic illness on your own can be hard. You may hide your illness to please people, or to avoid the stigmas, but it weighs heavily.
All of these thoughts and feelings led me to click “sign up” on Instagram at the end of 2019. The Chronic Notebook was born.
I had no intention of becoming an advocate. I started the page (which was initially called My Chronic Diary) to connect with other people living with chronic illnesses and disabilities. I posted about what had happened during my day, asked questions, and sought advice.
I very quickly realized that one of my deepest held beliefs — that I was unique because I lived with illnesses as a young person — wasn’t actually true. I came across many different people living with a wide variety of chronic illnesses and disabilities. People would comment, “same!” or “I get that too,” or “you’re not alone.” I felt a level of understanding and validation I hadn’t experienced before.
Within a few months of having the page, I came across chronic illness topics that simultaneously fascinated and frustrated me. I started to read medical papers, news articles, and stories to inform myself about the social, medical, political, and cultural issues that those with chronic illnesses and disabilities face. I began to use my page to share some of my thoughts on these issues, and The Chronic Notebook started to evolve into what it is today.
From the Instagram page came a Twitter page at the end of 2020, a Discord group at the end of 2021, and a YouTube and TikTok channel that started earlier this year. I’m also planning to launch a podcast later in 2022 with some awesome guests.
A lot of people reach out to me asking how I became a social media advocate, or how I attract the attention of viewers and get my activism noticed. I can safely say that a lot of it is due to the mystical powers of the social media algorithms, but I can also share these tips:
Medically reviewed on July 19, 2022
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