We’re all accustomed to the fact that there isn’t enough support out there for people with endometriosis, which is one of the reasons I worked for an endo charity managing support volunteers, and why I now run events focused on managing endometriosis. Yesterday, we held a mini-retreat. It overran by two hours, and it could have gone on for much longer. While I left feeling full of joy and so much compassion for the wonderful women who came along, I also felt exhausted from the general preparation of the day and the effort it takes to be “on” for seven hours.
It got me thinking about meetups and groups I’ve seen or heard about cropping up around the world. I am the first to say I think these are brilliant, and so needed in our community. But I also think a lot of work, preparation, and careful management go into ensuring you safely lead these groups and events in a way that’s going to benefit others and yourself.
If you’re thinking of getting involved or starting some kind of support group, firstly, that’s amazing, and secondly, following are some tips to help you get started:
If you can team up with a charity, go for it. At the charity I worked for, we trained volunteers on endometriosis facts, confidentiality, safety, boundaries, and how to best support the endometriosis patients who attended.
It’s also a way to look after and protect yourself. Having a charity behind you means you have support if your group was particularly tough or the emotional strain challenges you.
Some charities run support groups, which you can volunteer to lead, so have a look at what’s going on in your area or region before you branch out on your own.
I used to run a mentoring program for vulnerable young adults, and one of our main guidelines was about making participants comfortable. Asking a young person to open up and share their challenges in a bustling McDonald’s full of school kids is not exactly going to relax them or make them feel safe.
If you’re holding a group meetup, consider where people are going to feel most comfortable. When I hosted my first support group, I hired out a café in the evening, so we could share our stories in privacy if we needed to. I got it for free because of the cause, but you can usually find a quiet, friendly café during the day if you time it right.
Make sure the menu caters for everyone. Some people may be on the endo diet, so go to a venue without staff who roll their eyes when you order a gluten-free option!
Be mindful of your advertising and language. Endometriosis doesn’t discriminate, so your support group is likely to attract lots of different people. Ensure that your advertising images reflect the diversity of the disease, and be aware that not everyone with endometriosis identifies as cis female.
Find out about disability access in the area you’re going to, and check with the attendees who confirm if they need any special assistance and requirements.
Also be aware that some may want to bring along children, partners, friends, or family members. This can cause others to feel uncomfortable and unable to open up in front of people who don’t have endometriosis. It can also cause distress for those who are struggling to get pregnant to see others with babies or children. Yet, it’s important that everyone has the option to have support. So in my previous role, we suggested alternating meetups. Some would be family, friend, and child-friendly, while others would be only for people with endometriosis. This enables attendees to make their own choices.
It’s tempting to feel like you don’t need boundaries when supporting others. When I worked with vulnerable young people, all volunteers had a volunteer phone, which they had powered up only on certain days and at certain times — for good reason. Many people don’t think it’ll happen, but you could get calls you’re not medically, professionally, or legally equipped to deal with at an hour when it’s difficult to get other support. Suicidal calls, inappropriate messages late at night, or even dependency can occur if you’re not working with a charity or appropriately trained. It’s very difficult to know how to deal with these safely and professionally.
Boundaries are also there for your well-being. You can’t pour from an empty cup, as they say, so having boundaries helps you keep that cup full.
Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.