Health Care, Life Stories

Online chronic illness support groups can be taxing – but I need mine

The only people who understand what I'm going through are other chronically ill people.

Once I decided to take a break from university in order to try and solve which chronic illness I had, I started going to support groups for people with chronic illnesses. This group wasn’t specific to any conditions – which was perfect for me because I was undiagnosed at the time.

I felt extremely welcome in the support group, which was amazing because I felt so alone as someone who was undiagnosed. Less than a week later, I logged on to Facebook to see a long message was posted by one of the moderators of the group. The admin, who had made all of us feel so welcome, had died from complications from Crohn’s disease at 41-years-old.

Within a day, I had left that Facebook support group. While I hadn’t known this person for long – and only online – her death hit me hard and also reminded me of how aggressive chronic illness can be. I didn’t tell anyone of her death or how upset it made me because I didn’t think they’d understand and would just tell me to get over it.

I didn’t have much time to think about whether or not I should join other Facebook groups, however, as I was hospitalized less than two weeks later. Doctors diagnosed me with systemic urticarial vasculitis, which I had never heard of before.

Although I regret it now, I started googling what my disease was and how common it is. While I was able to learn more about my illness, I was not able to find how many people have it. No matter how many hours I spent looking for just a statistic, I couldn’t find one.

I felt very alone and overwhelmed. I also desperately wanted to talk to other people with my condition because I wanted to see how they managed it, both physically and living with it, emotionally. Most resources and articles written about my condition were by doctors, not people who actually have to live with it.

Then it hit me: I need to find a support group for people with systemic urticarial vasculitis.

After failing to find an in-person support group in Massachusetts for vasculitis, where I lived at the time, I started to search on Facebook to see if I would have more luck there.

I joined a group for people with urticarial vasculitis the second I found it. The group has less than a thousand people in it and is filled with people from around the world, from the United States to India to Australia. I suddenly wasn’t alone with having urticarial vasculitis anymore.

While no one’s death has been announced it the group since I joined, it hasn’t been smooth sailing either. It is difficult to see people’s lives being harmed by the same disease that has made my life very difficult. At a selfish level, it’s hard to see that people’s symptoms being better managed by the same medicine that has made me feel even worse.

I would never leave this group, though, because we are each other’s biggest cheerleaders. When someone is rightfully feeling down, we all leave comments of encouragement on their post. We also share with the group if anything helps us feel better in hopes that it may help someone else relieve their symptoms.

A few months ago, someone who was just diagnosed with urticarial vasculitis emailed me asking for advice on what to do to feel less isolated, and I told him about the group that I’m in. Not having a Facebook account before, this man created one just to join our group. A few weeks later he emailed me again and told me that group has been extremely helpful for helping him cope with his new diagnosis.

Chronic illness groups, whether online like mine or in-person, all have their pros and cons. I’m grateful for mine because it makes me feel less isolated when my symptoms are weighing me down.