Could You Benefit From A Patient Support Group?

What they are, how they could help and how to find one

Two women hugging in center of group

This season on Chasing the Cure, patients from all over the country have received a diagnosis for a wide array of medical conditions. From chronic pain to a mother-daughter pair who discovered they had the world’s rarest disease, sometimes the biggest help for these patients comes from the knowledge that they’re not alone.
That there are other people out there just like them.
In our “Beyond Diagnosis” videos, you can see how patients have connected with people who are just like them and found not just a path to treatment, but comfort.

Support groups connect people all over the world for numerous reasons — grief and loss, identity and addiction. And did you know that there are thousands of patient support groups out there?
They’re closer and easier to access than you might think, even if you live in rural America.
Let’s have a look at patient support groups – what they are, how they could help and how to find one. This might be the article you need to reach out and connect with a community that can help you on your journey.
What exactly are patient support groups?
Patient support groups are designed to connect people who have shared medical experiences, concerns or symptoms so they can provide support for one another. Sometimes you just might need someone who understands what you’re going through to listen. Other times, you might want to ask questions about coping techniques or strategies other patients have found helpful.
However you choose to lean on your patient support group, odds are, you’ll find a community of people who understand your condition, how it affects your life and a reassuring ear. 

How could a patient support group help me?
Patient support groups can offer practical and emotional support in a variety of ways. Here are just a few ways that a group could help you along your journey with your medical experiences:

  • A shared vocabulary. Remember having to explain every acronym or medication to co-workers and family? Support groups give you access to people who have likely experienced many similar diagnoses, tests and treatments so you don’t have to explain your time again and again.
  • Advice and resources. From medication and treatment side effects to what to expect next from your disease, support groups can offer tips and advice to help guide you when you’re feeling challenged or frustrated.
  • Support. Sometimes you just need someone to listen. To give you a hug. To understand you’re mad or to be excited to hear your great news. With support groups, you’ll be sharing with people who know that not everything needs or even has a fix. Support groups are filled with great listeners.
  • A community. If you’ve ever felt alone or unseen on your medical journey, a support group can become like family – a family who understands living with the same condition.

If those benefits sound intriguing, you might be ready to find a patient support group.

Where can I find patient support groups?
Patient support groups can be found nearly everywhere. They’re offered through local hospitals and specialty clinics (such as oncology clinics). Infectious disease physicians and doctors who work with rare illnesses, chronic pain and autoimmune conditions tend to be quite familiar with local patient support resources as well. The first step to finding a patient support group is to ask your physician.
If you’d like to begin the search on your own for an in-person support group, start on the internet. Perform a search for “<your condition> support groups near me” and you’ll be given a list of local resources you can explore.
But what if you live in a part of the country where access to specialty medical care for your condition is sparse?
The good news is that there are a wide variety of patient support groups online.
You can begin your search for an online support group through the World Health Organization’s master list. From there, you can do a web search for “online <your condition> support groups” and explore the various online communities.

As you explore support groups, here are some tips to help you find your ideal fit:

  • You should feel comfortable. You should be welcomed by the group and never feel attacked.
  • Good groups are about give and take. Support groups are there for all the members. Don’t be afraid to speak up about how your experience could help another member.
  • It might take a few groups. Online and in-person groups can vary. Online groups tend to depend on the personality of the moderators and in-person groups are largely a product of the facilitator (person who runs the meetings). Finding the right group could take a few trips around the block to find your most supportive fit.
  • Listening is important. Many people in patient support groups have experienced not being listened to by a medical professional and come to their support groups to be heard. Learning how to listen is important, as sometimes, group members will just need to hear that they’re heard and supported. Others, they’ll ask for help. A good tip is to always ask someone, “How can I best support you?” and let them lead the conversation.
  • Respect the privacy of the group. Never share stories from your support groups outside of the group. Avoid taking screenshots or showing online group conversations to people who aren’t members of the group.

Now, do you think it could be useful to have the support of someone who understands the medical puzzle you try to solve every day?
If so, a patient support group could be just the support you need. And no matter where you live or the condition you suffer from, support groups are out there when you’re ready to start your search.

E. Napoletano is an award-winning journalist and the recipient of the 2019 Illinois Women’s Press Association first-place prize for her feature on the traumatic effects of family separation policies at the border.