People often ask me how I’ve survived 21 years living with psoriatic arthritis. My response is always the same: with the support of online chronic illness communities.
The first few years after my initial psoriatic disease diagnosis were very lonely and confusing times. At the time, I didn’t know anyone else who had a similar diagnosis, let alone four other debilitating chronic illnesses.
I’d spend hours searching online for real information, not just medical jargon about medications. I wanted, no I needed, to know that I wasn’t alone.
Then, the age of social media began to change, and boy was it a game changer!
Although I joined Facebook and Twitter at the same time, I only used the latter to discuss chronic illnesses. The reason for this was that I needed a place where I could talk openly, a place to vent my frustrations and bounce ideas around with others like me.
At the time, comments made in a private Facebook group could be seen by a member’s friends. Not wanting to hurt the feelings of my family members, I chose the platform they weren’t on.
I remember spending hours on my phone tweeting with others who understood what I was going through. Unlike with family members or friends who had never heard of or experienced psoriatic arthritis (PsA), fibromyalgia, psoriasis, and endometriosis, I didn’t have to explain my diagnosis every time I engaged in a conversation.
The only problem I had with Twitter was the limited amount of characters per tweet. But this prompted me to begin blogging about my experiences and branch out into chronic illness advocacy and other social media platforms.
The best part about meeting and talking with people on social media was that there was always someone available. It didn’t matter what time of day or what day of the week — I always had someone to interact with. This suited me, as my body often resisted abiding by a typical schedule, and I could reach my people whenever I needed.
The PsA online community is one that is very special to me. Unlike some other forms of arthritis, PsA is not well-known. It’s often disrespected and dismissed as just joint pain and a rash.
To be honest, even after finding others with psoriatic disease, the lack of information about it led to much confusion about my own experience.
I must not have been the only one who felt this way, because around 2016 I began noticing individual chronic illness online communities popping up that provided educational information and a place to socialize. It was in these groups where I began learning more about PsA.
Here I was thinking that my rheumatologist had provided me an extensive explanation of my disease, when he really only gave me the tip of the iceberg! At one point, I even doubted my diagnosis, because some of my symptoms differed greatly from others in my PsA support groups.
But, as I learned in one psoriatic arthritis online community with medical information, there was a reason my experience was different: There are five types of PsA. And a patient may have one or any combination of them.
Online communities have improved my life in so many ways.
Taking the information I learned about the types of PsA to my doctor, it was determined that I had three of them.
Understanding my types of PsA made a world of difference. I no longer felt like an outsider when chatting with those who had a different combination. It brought a better understanding of how a group of people can have the same diagnosis and a totally different experience living with it.
I feel empowered having access to information regarding PsA, its symptoms, and treatments. I love the conversations they prompt me to have with my medical team.
Most importantly, I feel encouraged to practice self-care and to take the precautions necessary to decrease the number of flares I experience.
There are a couple of key things I consider when joining a PsA online community.
Am I in need of social interaction, psoriatic disease education, or a good laugh?
Social groups are fine, but if the group is filled with people who only like to complain about life, I find that the attitude spills over into my own life.
I prefer social groups that offer tips and some humor to offset some of the agonies we face living with such a painful illness. Humor plays a huge role in my chronic illness life. I need to laugh, and being a member of a community that knows how to make me smile is a must.
My preferred type of online community has the same goal as my blog: to educate, empower, and entertain. Having a community that has similar goals to my own motivates me to have new ambitions, all while feeling supported.
Online chronic illness communities are places where I can meet new people, hang out with those I’ve known for a long time, learn more about PsA, and share my experience without judgment.
They have been my support for the last 21 years and counting.
Fact checked on February 25, 2022
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