For more than 25 years, Jochem Verdonk has been involved in all kinds of interest groups for people with a disability or chronic illness. Despite all the differences, he also sees important similarities. Organising meetings for peers is such an similarity. What makes peer contact special?

Peer contact works! Many people with a chronic illness or disability have known this for a long time. It now has been scientifically proven as well. Contact with peers not only improves psychological well-being, but often also physical health. More and more doctors and other practitioners are therefore referring people to peer groups.

In May 2017 I started monthly Living Room Meetings for people with ME/CFS. The interest in this group was this great that a second group even started in September 2017. Both groups still meet every month. Some participants have been involved since the start, for others after a while it is enough. Friendships for life are formed.

Unique benefits

The special thing about contact with peers is that getting together is the only goal. However, contact with peers has a number of unique advantages:

We mutually recognise each other's symptoms, the physical disabilities and the neuro-cognitive disabilities (the infamous brain fog). That's gold! This certainly applies to those who have been searching for years or who have been told over and over by practitioners that they "are not actually sick" or that "it must be stress".

As peers, we acknowledge that we have a complex, multi-system disease for which there is no treatment (yet). We know we are really sick, even though most doctors can't do anything. That often makes our way lonely, because our families and friends often follow the advice of doctors. Contact with peers is the proverbial warm bath.

Because we understand each other so well and we know of each other what we are going through, we can give each other emotional support. Half a word is enough for us; we don't have to explain anything. Therefore, an encouraging word from someone who is going through the same thing as you has a completely different impact than that of a well-meaning friend, family or therapist.

The practical knowledge and accumulated experience of peers together is enormous. We exchange these during contact with peers. We share our experiences and tips about living with ME/CFS, about treatments, about medicines, about aids, about services such as Social Support Act, UWV and Social Services, and more.

Usually the Living Room Meetings have a theme. These are submitted by participants. I also look at what's going on in the ME/CFS community. Most themes have come up more often in the past five years. Yet our conversations are never the same. New participants bring new input. And also “old” participants are no longer the same people as they were two or three years ago.

More advantages

In the literature I found yet other benefits of peer contact:

• Coping with: It's easier to talk about your life with ME/CFS with peers.
• No pressure: During peer contact we are just together, there is no goal to be achieved. Ironically, it can be very healing to not actively work on your health for a while!
• Role model: The facilitator can be a role model for the participants. Just by being there and doing this volunteer work.
• Meaningful: It can be satisfying to offer another participant hope and courage. This applies to the moderator and the participants.

Solidarity

Many people with a chronic illness or disability have to deal with discrimination, exclusion and lack of understanding. This has major consequences for our psychological well-being. Research shows that you can counteract this relatively easily: by feeling part of a community. This way we come back to peer contact again. There we meet, we understand each other and friendships (sometimes lifelong) develop!

The Online ME Living Room groups meet every first Monday and third Wednesday of the month, from 14:00 to 15:00. The meetings are online. More info and reports from previous meetings: https://www.jochemverdonk.nl/en/living-room-group

Jochem Verdonk got ME/CFS in 2015. He is a journalist at WijRollen.nl, the community for and by wheelchair users. On his personal website he writes about his life with ME/CFS: https://www.jochemverdonk.nl

This column was published on ME Centraal at 27th of May 2022.