Finding My People and Protecting My Boundaries in the Chronic Illness Community

I thrived when connecting with the chronic illness community. I also had to learn how to navigate it safely to avoid the toxic elements.

Community is a unifying force among chronically ill people, helping us feel seen and part of a group.

Well-meaning loved ones support us wholeheartedly, but they may never truly understand our lives because they don’t share the same experiences.

I wrestled with various chronic illnesses from early childhood, often feeling devastatingly lonely. My various illnesses wreaked havoc for over a decade before I finally built a support network of people who understood what I was going through.

Their presence enriched my life on so many levels. However, I also fell prey to toxic elements lurking in these communities.

Learning to navigate chronic communities with care is crucial to avoid additional stress. Here’s how I did it.

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My life before finding a community

Chronic illness first entered my life before I hit double digits. This meant regular hospital visits and isolation from my healthy peers.

The feeling grew more acute when I entered high school, and puberty hormones raged through my body.

I felt genuinely alone — like no one around me could understand what my life had become. It was a constant cycle between something close to wellness and exhausted sickness. I missed more school than my peers, and people hounded me with invasive questions about what was happening.

I hadn’t discovered the terms “chronic illness” or “disabled.” No doctor had told me that these words applied to me, so I couldn’t figure out how to explain my situation to others with anything but vague descriptions, like, “I just get really unwell sometimes,” and “I need to take medication to stop my body from attacking itself.”

When people responded with confusion or more invasive questions, I suppressed my experiences. I thought if I acted as if I were fine, then I could fit in with my peers and feel less alone.

Instead, my approach made the symptoms worse because I refused to accommodate my illnesses and give myself the care I needed. I’d end up even more alone when I got stuck in bed for weeks on end.

The impact of finding community

After over a decade of pushing through illness solo, I finally started to meet my community in my early 20s. Initially, I made connections with fellow chronically ill and disabled people at my university.

They intervened on my behalf to enable easy access to lecture halls and adjustments for exams. They empowered me with knowledge about my rights as a chronically ill person and encouraged me to make the most of the support I was entitled to.

The support offered a taste of community that I decided to pursue further. I discovered Instagram, where I connected with people with illnesses similar to mine through hashtags.

I immersed myself in these communities, feeling overwhelmingly happy to have found people who could empathize with my experiences and offer advice on how to manage life with chronic illness.

Spending hours every day chatting to people online felt like a much-needed reprieve from the frustrations of my daily life with chronic illness. It felt liberating after years of having to overexplain my experiences to everyone I knew.

In these communities, we had an easy shorthand that reinvigorated me after losing so much time to suppressing my truth.

Later on, I got to experience the chronic illness community in person. First, through the shared experience with my sister, who lives with chronic migraine, and then by meeting some of my online spoonie friends in person.

A “spoonie” is someone who identifies with the spoon theory of chronic illness. It means we have limitations in the amount of energy we can spend each day or on each task.

The combination of online and in-person community lifted me out of my zombie-like state, encouraging me to take charge of my life with chronic illness and broaden my social circle.

Becoming subdued by toxicity

While my experiences with the chronic community were mostly positive, I also fell victim to the toxicity that’s sometimes present in these groups.

Some of these online spaces, particularly on Facebook, were taken over by toxic positivity. Community members weren’t permitted to complain or seek sympathy for their frustrations and difficult days.

The people dominating the groups insisted that the only way to handle chronic illness was by “fixing it with your mindset.” For a while, I submitted to this outlook as well, convinced that I was making myself sicker by grieving the life I used to have.

In other groups, I saw the opposite occur, where people simply weren’t allowed to thrive because they were ill. Everything had to be doom and gloom, and people were shouted down for celebrating their wins because it was insensitive to others.

I struggled to find balance in my life as I rebounded between toxic negativity and toxic positivity.

Diagnosis or identity?

I also fell into other groups that overidentified with their conditions. I was told repeatedly that my life should revolve around illness because that was the “only way to live with it.”

Paired with the belief that no one healthy in my life could understand my experiences, I became increasingly isolated from the outside world, lost in the all-consuming nature of these communities.

I was unable to accept that it was OK to feel the full spectrum of emotions while dealing with illness and that it was OK to find support in my regular life. As a result, I limited my relationships with non-disabled friends.

Ejecting myself

My “this has to stop” moment came when someone in an online community said that I had no place to speak about my own illness. Apparently, I was not processing it “correctly.”

I immediately ejected myself from online chronic illness communities. It was the safest way to detoxify my life at that moment.

At first, it helped shield me from the toxicity on display, but it also left me bereft. I’d spent a decade coping alone and felt blessed to find people who uplifted me while I navigated chronic life.

Without them, I suffered.

I longed to feel seen, to share my experiences without judgment, and to be heard by people who empathized with my life. I also wanted to keep learning about all the illnesses that impact people without recognition from the wider world.

Reengaging with chronic communities in a safe way

I now know that totally rejecting my chronic illness communities was an overcorrection. Learning how to reengage was a slow process, one I approached with caution.

I focused on developing my in-person relationships with trusted friends I’d met through these communities. These friends had also rejected the toxicity and forged ahead alone.

Later, I again immersed myself in select online chronic communities that emerged in response to the unhealthy groups.

I still approach these with vigilance, ducking out of conversations if they lean into shaming people for not processing their illnesses the “correct” way.

In response, I encourage people to think independently to avoid submitting to toxic groupthink. Everyone has a unique relationship with chronic illness, and that’s OK.

Takeaway

Community is crucial to my survival with chronic illness, and I’ll never regret seeking it. Still, I’m the first to admit that it can get toxic when left unchecked.

However, it’s worth the time invested in picking out the good from the bad because my chronic community enriches me every single day.