My Journey to Becoming a Chronic Illness Advocate on Social Media

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?

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In the beginning

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.

My journey to advocacy

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.

My social media tips

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:

• Don’t rush it: It took my page over a year to develop a voice, tone, theme, and style that works for me. You don’t have to get it right on social media overnight, and you probably won’t. Don’t be disheartened by this!
• Remember, we all start small: Once upon a time, every large page had 0 followers and 0 likes on their posts, so don’t worry if your social media numbers aren’t growing at the pace you wish they would — it takes time!
• Make “shareable” content: A lot of my posts’ traction comes from other accounts sharing them. Think about the kind of content you’d be motivated to share with others, the kind that stands for something you believe in. Try to channel this into your own content.
• Make “saveable” content: Apps where you can save content like Instagram and TikTok often push posts further up timelines. Think about the content you like to save — how-to guides, helpful products, or informative posts. Try to create content that will inspire people to save it.
• Every social platform is different: What works for TikTok isn’t going to work for Twitter, and what works for Instagram isn’t going to work for YouTube. You’re going to need to learn how the platforms work, how connections are established, and how content is promoted to ensure you make the most out of each site.
• Always make content that you believe in and enjoy making: It can be tempting to make content solely based on what others want to see. While it’s important to keep a pulse on what your community is interested in, it’s also important to be authentic. Your authenticity is the thing that will make your page stand out. If you’re only ever posting what you think others want to hear, it will become obvious to your followers very quickly.
• Find a niche: Think about the kind of topics or areas that lack attention, or the kinds of pages that haven’t yet been created. If you think that there are plenty of other advocates doing one thing really well, then consider what you might be able to offer that’s different. This means that you and your page will become known for something in particular.

If you ever want to reach out, please feel free to contact me on any of my socials: Instagram, Twitter, TikTok, and YouTube. I’d love to hear from you!