Thread by @AlisonSbrana

Let's talk about peer support for #LongCovid –– I recently made this handout to help people experiencing Long COVID find a good community that fits their needs.

Here's the PDF via Body Politic's website (it has links embedded): wearebodypolitic.com/resources-for-…

A short thread 🧵 1/

First, some context: I created this because I have lived experience.

8 years ago I got a virus and never got better. I've been living w/ chronic illnesses many people with Long COVID are now being diagnosed with like #MECFS #Dysautonomia #MCAS and so on, for 8 years.

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I've been a part of SO many support groups in my 8 years of being sick/disabled. Online, text chats, whatsapp groups, social media, in-person, you name it––I've done it. I also used to work as a care coordinator/community health worker, so I've got perspective on the topic.
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IMO as someone who has lived through getting a virus & never getting better, through episodic and confusing illness, through understanding my new normal and embracing my disability identity...
Community & peer support is *essential* to supporting folks living with #LongCovid
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There are phenomenal patient-led groups doing peer support. And yet, w/ the prevalence of #LongCovid it means there are so many people who haven't found support. There is a gap btwn these incredible support groups, and the many people living w/ LC who could benefit from them.
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As a former care coordinator + disabled person I'm all about thinking through barriers to access. It can be intimidating to seek out support on your own, and googling #LongCovid can be overwhelming. So, I made this handout to help make it easier.
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wearebodypolitic.com/resources-for-…

The handout is one page that providers can print and offer to #LongCovid patients. #LongHaulers can go home that day & have everything they need to start connecting with peers. QR codes link directly to sign-up pages for groups (those webpages can be hard to find sometimes!)
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It can help #LongHaulers choose which method of community support is best considering access needs, comfort zone, specialty area, & intersecting identities that affect their experience living with #LongCovid.
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I break this down by listing:
- technical difficulty of each group
- subgroups offered by each group. This can be the difference in ppl w/ marginalized identities feeling seen & heard in support groups, and the opposite
- size & platform of each group
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wearebodypolitic.com/resources-for-…

Each group listed has been included because their support groups are led by people with lived experience/ are patient-led, meaning patients help lead and moderate the group.
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I volunteer for @itsbodypolitic supporting #LongHaulers because I wish this existed for me 8 years ago when I got sick. Getting something like this from my provider would've made me feel so seen & validated, especially among a sea of gaslighting from healthcare interactions
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Peer support has been so essential for me to cope with #MECFS & more generally being chronically ill & disabled in the US. I had a big table at my wedding for all of my friends from support groups––they see, love, & accept me exactly how I am. There is so much power in that
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Anyway, all that to say, please share this. Let's help connect people living with #LongCovid to the community & peer support they deserve to access.

For digital use + printing, I recommend downloading the PDF here: wearebodypolitic.com/resources-for-…

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