The wonder and challenge of online patient groups
Are you considering joining a patient group?
Hi Readers! I finished the first draft of my book! 200 pages of my wild ride. It was a huge undertaking but I’m excited for the next chapter in the process.
I know this post might not be something everyone needs to read right now, but a day might come when you or a loved one might want the support of a digital patient group. So just something to keep in mind for the day you might yearn for this unique kind of community.
It’s nice to know you aren’t alone.
Shout out to all my aHUS patient group members! I’m so grateful for you.
If you have any illness or challenge, patient groups can be a beautiful community.
If you’re new here, I started writing a book when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. I hope to include excerpts here as I write. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Also names have been changed for most of my medical staff.
A Word on Patient Groups
At some point in your life, you may encounter the wonder that is a “patient group.” Some include caregivers and some don’t, and they can be amazing resources.
But they can also be sources of anxiety if you’re off-balance.
When I first joined a patient group, it wasn’t until I was home and stable. I didn’t want to interact with others at first. Plus, it didn’t feel like my vibe. I’m not really a “Facebook group” kinda gal. It’s not a judgment about the people, and more about the “Facebook” part. Some disease groups are on reddit as well, but those feel less personal. And often, in my opinion, more negative.
When I first joined an aHUS group, it was incredibly relieving and overwhelming at once. The kind aHUS patient group provided me with “it gets better” support in a way I found invaluable. But also at first, I became a dash obsessed. I would read and read and inhale and inhale all the posts: the good, the bad, the scary, the tragic. I couldn’t put it down.
My therapist suggested checking it only once a week to cool the obsession. I didn’t adhere to her wisdom. I still checked it once a day.
A year later, I see folks join the group and exhibit the same obsession. I was just a reader, but some post constantly with every lab, looking for answers.
I’m reminding myself as well here, but patient groups are not the best place to try to get official medical answers. Always ask your doctors.
However, I do think it’s a great place to compare notes. It’s a perfect place to make friends who absolutely experience the same challenges. I’ve met beautiful people in patient groups from across the world.
It’s also a place to post and read articles about the disease and create meet-ups.
The first time I met someone with aHUS in real life, I was floored. I loved meeting her in a way that transcends normal interaction. Almost as if I was meeting a new relative. In a sense, we are related. We share the same blood challenge.
So I do support the use of patient groups. Go, learn, and most importantly, make friends. But if you’re scouring them like a restless Nancy Drew at 3am to find a missing cure or solve your side effect dread, put them down, and come back again when you’re really ready.
In the end though, it can be a beautiful community. I’m lucky to have them.
Do you have a patient group you love? Are you in one as well? Any tips for folks on navigating patient groups and how to best use them? Please leave a comment and share!
Reader Comment of the Week
“A beautiful account, Taylor. You'll be well before you realize it.” Dave
If you’re new here and wondering, “what happened to this lady?” read The Fighter Still Remains Part 1. xo
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