Should I Join a Mesothelioma Support Group?
Health & Wellness
Written by Dana Nolan | Edited by Amy Edel
The Patient Advocates at the Mesothelioma Center frequently hear mesothelioma patients say, “I don’t know if the mesothelioma support group is right for me because I’ve never been to a support group before.” As the facilitator of the group for the last 13 years, I’ve personally seen people join and just observe initially to get a better feel for the group. And in time they become active participants, asking questions, sharing their own experiences and connecting with this community of survivors and family caregivers.
Support groups provide a safe place to share experiences and feelings about a common life experience. Many people with mesothelioma have a network of loving and caring family members and friends. But family and friends don’t necessarily understand the experience of having mesothelioma, so it can be challenging to get the kind of support and understanding they may want. Disease-specific support groups can fill that gap, especially for people who have a rare type of cancer like mesothelioma.
While each support group is a little different, there are many commonalities. The support group setting can be hospital-based, community-based or online. Support group facilitators are often mental health or medical professionals, but they can also be peer-lead. (Peer-lead means the facilitator is someone who also has the same illness as the group members.)
Healthy support groups have ground rules that set the stage for everyone who attends to feel heard and accepted. The ground rules usually address confidentiality, sharing time, avoiding giving unsolicited advice and supporting group members in whatever treatment choices they make without judgment.
When Support May Help
You might be a good fit for our monthly mesothelioma support group if you want to meet others living with mesothelioma or their family caregivers. You may desire a safe place to share your thoughts, feelings and experiences. You may also want to support others, celebrating treatment successes and allowing space for others to share their challenges and setbacks without trying to cheer them up or fix the situation.
Reasons To Consider The Group
- Meeting others who are living with mesothelioma or caregiving for a loved one.
- Sharing your thoughts, feelings and experiences with others who understand.
- Supporting others.
Regular participation isn’t required. You can join when it’s helpful to you. If you’re in a medical or emotional crisis, need individual emotional support or feel distressed hearing a fellow survivor isn’t doing well in their mesothelioma treatment, it’s always ok to pause your participation.
What To Expect During Meetings
I often hear this, “I want to join the mesothelioma support group, but I’m uncomfortable speaking up in front of others or sharing my personal information.” In our mesothelioma support group, we don’t call on specific group members to participate. Instead, we invite anyone who wants to share their mesothelioma story or give an update to do so. Sometimes, people join the group for a few sessions before they’re ready to speak up.
I also hear, “I’m not sure what to say if I speak up in the mesothelioma support group.” During the group introduction, we remind participants of things that can be helpful to share.
Information Participants May Share
- Your name and where you receive your treatment.
- What type of mesothelioma you or your loved one has.
- When it was diagnosed and a summary of treatment received so far.
- Any specific questions or concerns you have that other group members may have experience with.
Participants in our group over the last 13+ years regularly express that they love the opportunity to connect with others who have mesothelioma and to give and receive support. Please reach out to our Patient Advocates to register for our group and ask any questions you may have.
