A few weeks ago, I published a guest post by CK Harrington about living with Charcot-Marie-Tooth Disease (CMTD). During our conversations, we discussed how important virtual support groups are.
Support groups have always been helpful for anyone living with any chronic illness. However, physically travelling to a support group isn’t always easy for people who live with chronic pain or other disabling health conditions.
Related post about online support groups
During the pandemic, many health organisations took their support groups online. Being able to access a support group meeting virtually is so much easier for anyone living with a health condition. There’s no travelling. No sitting in uncomfortable chairs. There’s not even any need to shower or wear outdoor clothes. I hope that virtual support groups continue and become more popular. They are surely a way forward.
CMTA Compass – A Virtual Support Group For People With Charcot-Marie-Tooth
CK Harrington mentioned to me that the CMTA had set up a virtual support network called Compass and I thought you might be interested in learning more about it.
The following post has been written by CK Harrington.
CMTA COMPASS: Establishing Real Compassion in Virtual Environments
The world is a crazy place right now, and a little bit of compassion can go a long way to improving a person’s overall mood and condition. CMTA knows that compassion matters when it comes to patients’ health. That is one of the motivating factors behind their COMPASS effort.
Studies have shown that compassion is key to patient satisfaction, recovery, and pain management. That’s why CMTA developed COMPASS, an online support group program designed to help CMT patients cultivate genuine compassion in virtual environments.
What Are CMTA COMPASS Events?
CMTA Compass is a monthly virtual support group for 19-30 y/o people diagnosed with CMT. The virtual structure allows people from different regions to create a community around their shared chronic pain and mobility challenges created by CMT. Members share their stories, connect with each other, meet experts, and learn about resources that help them live more comfortably with their disease.
These events focus on topics relevant to CMT patients, such as: finding meaningful employment, education, dating, relationships, balancing work, hobbies, and interests with pain management, etc. Themes are usually based on topics relevant to current events or community issues and help guide group discussion.
Often experts are brought in to talk with the community. These professionals include doctors, psychologists, therapists, educators, and other professionals. These speakers can provide valuable insight to patients.
Benefits of COMPASS for Patients
Patients find community and help to navigate their chronic illnesses. It is especially beneficial for those who may have been recently diagnosed with CMT.
Patients learn how to manage their condition by controlling their health care (e.g., learning about medications, orthopedics, and exercise routines). They gain access to tools that can help them monitor symptoms and track progress over time.
CMT Patients feel less isolated by gaining a community. They feel they are not alone anymore because now other people understand what they are feeling or going through. Patients can share their experiences with others and receive advice on how to cope with their problems or symptoms.
Patients have a sense of hope; they know that help is available for them if they need it. They also know that someone else has gone through similar experiences and survived them. This gives them hope that they will also survive this difficult period of their lives.
The most significant individual benefit is the gift of community outside of the COMPASS support group. Patients are encouraged to engage with other group members outside the structured events. Some of the relationships kindled by COMPASS can last a lifetime.
The CMTA organization benefits greatly from these COMPASS events too. As organizers, they gain valuable feedback from participants. This feedback helps guide their research and outreach efforts.
Conclusion
CMTA’s COMPASS meetings perfectly exemplify a win-win health marketing strategy. CMT patients gain community, valuable resources, and visible compassion for their chronic pain struggles. CMTA, the parent organization, also gains valuable feedback from patients. The insight gained helps inform future outreach and research.
Thank you to CK Harrington for this contribution. It has been interesting learning about COMPASS. I hope that more health organisations follow suit as virtual support groups can be invaluable to people who live with pain, chronic illness or disability.
Thank you so much for reading.
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Take care,
Liz.
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Thank you both for sharing this – so helpful to have online groups and events for those with different conditions, rare conditions like this and everything else in between. xx
Thank you Caz. Online support makes such a difference, doesn’t it?