Lindsay has lived with chronic pain since she was twelve years old. She organizes a local chronic pain peer support group in Washington, DC and she works as the policy analyst at the National Council on Independent Living, a grassroots, cross-disability advocacy organization (www.ncil.org).
Pain can be extremely isolating. Even with a wonderful family and supportive friends, it’s easy to feel that no one really understands what you’re going through. I’ve had some level of constant pain since I was 12 years old, but in my early 20s my pain worsened significantly. After several years of countless medications, treatments, and surgeries, I got to a point where I felt completely lost.
On my doctor’s recommendation, I signed myself up for a pain management program. I can’t deny that I learned a lot of methods to help manage my pain that I use to this day; in fact, I still think meditation is one of the most helpful ‘tools in my toolbox’. But the most beneficial aspect by far was the opportunity to meet and learn from other individuals living with chronic pain. Until that time, I didn’t realize that there were other people like me. I definitely didn’t realize that there were other young people with pain. For the first time, I found myself comfortable enough to talk about my feelings in an uninhibited way:
- the sadness for what I’d lost
- the fear that I’d never learn to manage the pain
- the struggle of trying to keep everything that mattered in my life together
After the program ended, I wanted that connection to continue, but I couldn’t find what I was looking for. I decided there had to be others looking for the same thing, so I started a peer support group. We started small - in fact, I was the only person at the second meeting. But we grew- slowly, but surely. Over the course of the first year, we outgrew our meeting place. And while I’ve since moved to a different state, the group is currently thriving with 200 members. The consistent growth of the group proved to me just how valuable and needed this type of support is.
People with chronic conditions are used to getting advice from doctors and other healthcare professionals. We’re also used to getting - often, unsolicited - advice from people in our lives who don’t understand the complexities of what we’re dealing with. The importance of peer support hinges on its ‘peer-ness’; we have a shared experience, but there are no experts, there are no patients, and there are no hierarchies to adhere to. Peer support relies on truly reciprocal relationships. There is no incentive to participate other than to give and receive support. We use others’ experiences to inform our decisions and deal with personal situations, and we empower others by sharing our own experiences.
For me, this connection helps to make the pain a little less isolating. It validates my feelings and my fears. It’s given me the confidence to take more risks, and it’s taught me how to not give my pain too much power. Peer support group members come from different backgrounds, and we all have different experiences with pain, but the connection that’s built among people with this shared experience is unlike any other.
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Editor’s Note: Lindsay looks forward to writing more about her experiences in the chronic pain and disability communities for the National Pain Report. Some of the particular areas she’s learned a lot about through peer support include self-care, talking about pain to others, self-advocacy, and accommodating pain in the workplace. She also has a particular interest in how people with non-apparent disabilities find their place in the larger disability community. Let her know what you think.