When you’re dealing with a chronic illness, it often feels like you’re going through it all alone. Regardless of whether you’ve just received your diagnosis, are struggling through different treatments or are actually doing pretty well, being sick is isolating. Although there are many hobbies that you can occupy your time with, there is truly nothing like the healing that you can receive from interacting with others.
It doesn’t matter how empathetic your healthy family and friends are. If they don’t have a chronic illness, they can’t understand what you’re going through. And that’s okay, because there are scores of people who get it. All you need to do is find them.
That’s where support groups come in. Whether they’re digital or in-person, support groups for people with chronic illnesses are essential lifelines that will help you feel heard, seen and understood. These are your people, folks who know exactly what you’re dealing with, individuals who can offer sound advice and words of comfort.
If you’re struggling to find a community as a person with a chronic illness, one solution is to start your own support group. Not sure how that works? Keep reading to learn how to get started, step by step.
Step 1. Decide what type of support group you want to start
While it would be quite nice to populate a support group with people who are just like you, that might be unrealistic. This can depend on where you live, what your schedule is like, how you want to run your group and what your diagnosis is.
For example, if you live in a rural area, you might not be able to field enough members for a pulmonary fibrosis support group. However, a support group for patients with lung disease could be incredibly popular.
You could also consider narrowing your target membership based on factors other than disease. How about a support group for family members? A group for freelancers or people who work from home? A group for LGBT people? A group for foster parents? There are tons of possibilities that will widen your network and provide you with the community you’re looking for.
Step 2. Find a partner
Remember: A support group isn’t a one-time event. As life throws you curveballs, the demands of leadership might make you wish you had someone to help you carry the load. That’s exactly what a co-leader is for.
You and your co-leader should work together to grow the group, support its members and plan and run meetings. Because you’ll be working together so closely, you should share the same goals for this group as well as how you see it running, both from meeting to meeting and in a more long-term sense.
Step 3. Consider bringing in a pro
Some support groups lean more towards building a social network through shared experiences. Others provide coping mechanisms to help you move forward in your chronic illness journey. No matter what type of group you want to run, it’s smart to consider bringing in a professional facilitator to run the meetings for you.
Why? There are a few good reasons:
- It will allow you to participate more fully in the meetings. If you thrive on leading others, this might not be a concern for you. If, however, you want to be a real member of the group rather than a leader, this could be essential.
- It will lessen the amount of emotional labor you need to do during the meetings themselves. This is particularly important if you’re struggling on a personal level or if you feel uncomfortable with the idea of offering advice to others about their own difficulties.
- It will improve the quality of support you can provide. A trained facilitator, often a therapist or professional with experience in healthcare and chronic illness, will be able to help you work through difficult conversations and offer additional resources that you’re unaware of.
Step 4. Figure out the logistics
It’s time to dig into the nitty-gritty details, like where you’re going to host your meetings, when you’re going to have them and how often they’ll be.
As you begin working through this phase, keep accessibility concerns in mind. Things like wheelchair access, availability of electrical outlets, comfortable seating for guests of different sizes, accessible bathrooms, air pollution, elevator access, free parking and public transit are all important details that shouldn’t be overlooked.
If you’re planning to meet in a coffee shop- or restaurant-type setting, try to find a location that’s as accessible as possible for those with dietary restrictions, too. Think not just about allergies and common diets, but also about religious requirements, like halal and kosher foods and food preparation.
Step 5. Spread the word
In the age of social media, it’s never been easier to pass along good news—like, say, your shiny new support group. We love using online platforms that focus on locality, like Facebook. Be on the lookout for local pages and groups for cities, neighborhoods and chronic illnesses.
Don’t forget about old-school methods, too! Be sure to post flyers in coffee shops, community centers, doctor’s offices and other healthcare facilities. You could also send letters (or emails) to local doctors, therapists and social workers so that they can refer their patients to your group.
As you publicize your new chronic illness support group, listen to the feedback your target membership provides you with. Do they need to have certain facilities available to them? Can you find a location closer to a public transit line? Is there a better day or time? Is there someone who could help you spread the word?
While this support group is your baby, remember that it will grow best if you allow your community to shape it, too. Be as open to adaptation as you are to new members and you’ll find yourself (and your new group) thriving in no time!
Brenda Kimble is a writer and caregiver based in Austin, TX. In her spare time, she enjoys blogging to support local causes and connecting with others in her field. Outside of her work, Brenda enjoys spending quality time with her husband and three children.