Starting A Support Group

Starting a support group has been a great experience for me. Dealing with something such as a chronic illness can be very hard, both physically and emotionally. Physically because your body is fighting against itself, and emotionally because you may feel alone with it.

Not knowing anyone else that is living with the disease you are dealing with can be very hard. I never thought anyone would understand what I am going through and that I would be alone in this forever. Even if I had talked about it with someone, I would have to bring up rather disturbing descriptions of what was going on with me. It just wasn’t a very appealing conversation to have with just anyone.

While that was going through my mind, I started to think about everything I had been through the past couple years: getting diagnosed, having to try different medications, seeing myself get significantly worse, and getting different procedures done. I started to try to seek out people online through posting my own experiences, eventually I found some and tried to see if anyone would be interested in meeting up to start a support group.

I started to think to myself that there was no reason why I should not be able to be around people with my disease in person, so I thought about starting a support group in my area. I did not want this group to be a place where everyone sat in a circle and complained about their issues. This group is to be a place where you meet and have fun with others who understand what you are going through. I do not have any problem with people sharing their experiences and seeking advice, just as long as they do not feel bad about their situation because we are all going through something similar.

The issue with starting any group is finding people to attend. The easiest way to find people is socially. I started advertising my group everywhere I could think of: social media, hanging posters at local high schools and colleges, and even just talking to random people. I eventually knew 18 people in my area with my disease that would be interested in attending at some point.

The next thing you need to take care of is finding a location to hold your meetings at. Unfortunately, I had a very hard time with doing this. I tried contacting my local hospital, but to do it there, I had to have liability insurance, which I didn’t have, and everywhere else I looked at required a fee. I ended up having my first meeting unofficially at Whole Foods, but it seemed to work out okay. After, I ended up figuring out that a different grocery store allowed outside groups to use their conference rooms for events.

For my first meeting, I decided it would be best if I didn’t plan anything and just have everyone who came introduce themselves to each other to start. It was a good decision because everyone was excited to meet each other and exchange their experiences. We talked for two hours, which was the original amount of time I allocated for the meeting. Thinking about what to do for the meetings to come, I thought that we would need variety. Meeting in the same square room every time may get boring, so having some sort of outside event planned for every other meeting could be a good idea!

During the time you wait for the next meeting, it is good to have a way to communicate with the people involved in your group. I use Facebook as a source of communication. With Facebook, you can make a closed group where you can invite the members of your group and anything you post in there won’t be seen by people who aren’t in the group. You can post updates, ask for feedback, and whatever else you think is appropriate. It’s a good tool. For the people who don’t use Facebook, I send the same updates in an email. Everyone is bound to have an email address by now.

Starting a support group may be hard at first, but when it gets up and running, it’s very rewarding.

If you would like to start a support group through us, please send an email to info@psccommunity.org.


Aaron Damigos | Social Media Manager
PSC Community
Instagram: @aaronmichaeld