VR Spoonies Chronic Illness & Disability Support Group Celebrates 3rd Anniversary

Visually impaired like me? I’ve got you- here’s the audio recording of this article:

I wasn’t sure what to expect when I got my first Virtual Reality (VR) headset back in October of 2019. I wanted to try out the game Beat Saber after seeing other people playing it online. I wasn’t even sure if VR would work for me with my Optic Nerve Hypoplasia and other vision issues, but it turned out to work just fine for me, and I was HOOKED. After I had the chance to check out Beat Saber and other experiences suggested by the newly budding standalone Oculus market, I discovered something I hadn’t even considered before, but would soon change my life forever. Social VR.

My first experience with social VR was my discovery of Altspace. It’s a virtual events-based platform with a wide variety of communities and incredible user-created worlds that you can explore. I think the first event I decided to check out was a weight loss support group. I was absolutely blown away by the experience of meeting with other real people in a virtual environment discussing shared interests, and I made fast friends with a lot of folks there. I started attending weekly meetups, and it wasn’t much longer after that when I became a moderator and eventually a co-host of that meetup. My friends there taught me how to utilize the robust moderation tools Alstpace offers, and that was that. I was in. I discovered and joined a few other groups for writing, meditating, and deep philosophical debate. Social VR became a really important part of my week.

Before my discovery of social VR, I was mostly isolated due to being stuck at home. I can’t drive because of my poor eyesight, and I don’t venture out much on my own because 1.) my small town has very little infrastructure for pedestrians, and 2.) I worry about getting stranded away from home if my symptoms were to flare up suddenly and make it impossible for me to walk or ride a bike back to my house. As a result, I didn’t get to socialize much. I still had friends who I communicated with via chat services online, and occasionally we would get together for a party or D&D session, but overall I spent most of my time alone.

Social VR has this really magical effect where just standing in a room with another virtual avatar gives you a sense of presence. You feel like you are actually in another place with other people physically in the same room. I could be sitting comfortably in my own home, but put on the VR headset and find myself in a different place with other people any time I feel the need to socialize, and I actually feel as though I am “getting out” of the house. This was a massive game changer for me, and led me to become a full-on VR evangelist for folks who are homebound for any number of reasons. I even got some of my “normally healthy” friends to get their own headsets so we could hang out in VR together!

Naturally, I looked around for a support group in VR for folks with invisible disabilities and chronic illnesses. I didn’t see any on Altspace at the time, so I decided that considering I had some good training and experience from the weight loss support group that I could probably start up my own group for the spoonie community. Three years ago today, I hosted the very first meeting for what is now a really tight-knit, wonderful community of folks with a wide variety of conditions which impact day-to-day functionality.

Since its start, this group has been through a lot together. We got started just before the COVID-19 pandemic came into being, and we were able to rely on one another for support throughout that really frightening endeavor. Most of us in the group have compromised immune systems from one cause or another, so we were able to empathize with the very real fears and struggles disproportionately faced by the chronic illness community during that time. Over the years, a couple regulars even became pregnant and gave birth, which is a common life experience that comes with some unique challenges for folks in this community. It was really amazing to see the group come together to offer support during scary and difficult times and celebrate the happy milestones as well!

We’ve celebrated two previous group anniversaries and even had a few birthday parties for some regular members! We’ve been meeting every week consistently for three years now and also have monthly movie nights in Bigscreen! Due to the nature of life with chronic conditions, even I have had to miss a few of my own meetings, but the community is incredible, and someone almost always steps up to lead the group for me so I can rest when I need to. There are a number of incredible folks in the group who keep things running when I’m not able to make it. You know who you are, and I appreciate you more than you’ll ever know.

This is a GIF image that shows a birthday party in Altspace for one of our group members, SilverFoxtrot. There is a large virtual birthday cake and all of the cartoon avatars who represent group members are walking in and out of the cake, and Silver gives me a virtual hug. At the end of the GIF, a camera light flashes as I take a picture of the moment.

We are still meeting every Sunday at 7pm EST on Altspace, and this upcoming weekend we will be celebrating our three-year anniversary together after the usual Sunday meetup! You can RSVP here if you would like to join us. You don’t have to own a VR headset to attend, as long as you have a PC capable of running Altspace’s “2D Mode”, which you can learn more about here. You are also welcome to join our Discord server, which was made for the VR group, but has expanded to include all spoonies, not just those with access to or interest in VR. We also have a Facebook Messenger chat where you can get support quickly or just hang out with your fellow spoonies. You can request to join that chat by joining our Facebook group and making a post there. If you want more general information about our peer support group, click here. We hope to see you there some time!

Happy Anniversary! I love you guys.

“Being a part of this group has been a wonderful opportunity. We are all so different yet able to share our daily struggles dealing with disability with those who truly understand. Our members are some of the most empathetic and compassionate people I have met in vr.” – Puzlor

There are times when VR Spoonies makes you feel like the person you aspire to be. Then there are times you feel exasperated with the cards you’re dealt and this is the place to come and vent, without judgement. Sunny has created a wonderful platform for all people-except trolls. I, for one, am glad to call her my friend.– Anonymous

Altspace is set to close down permanently on March 10th. Our group is in the process of transitioning over to Spatial for our new home! We will continue to meet on Altspace at the usual date and time until it closes. Starting in February, we will also have a second weekly meetup on Spatial on Thursdays at 7pm EST to help group members learn how to get around on the new platform. Here is an article with more details on the move, and you can check out Spatial here and visit our new meeting space here.


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