Part 3 in Care Tuner’s partnership with Miles for Migraine to help educate and support people with migraine in making healthy behavioral changes to enhance their quality of life. Click here for Part 2: “Shirley’s Story: Building a Migraine Toolkit From Scratch.”
Kelly Amspacher knows how isolating migraine can be. Through the years, her social life suffered from too many cancelled plans and missed events, until friends drifted away and Kelly stopped scheduling plans at all. At the same time, chronic migraine ate away at Kelly’s ability to function in her career as a clinical nurse specialist, as well as in her PhD program that represented her future goals. Kelly was forced to say an anguished goodbye to both. When her daughter left for college four years ago, Kelly worried her world was disappearing altogether.
“I was floundering. Disconnected. I didn’t feel like I had a purpose,” remembers Kelly, 59.
Sadly, her experience is common. Migraine is a cruel expert at creating isolation by stripping away social supports. That lack of support can intensify feelings of isolation — which actually makes migraine worse.
Social support, on the other hand, is crucial for thriving with migraine. That’s why a key aspect of migraine self-care is creating and maintaining a network of people who are good for your health. It’s also why the advocacy nonprofit Miles for Migraine created its Migraine Support & Community Groups: positive, facilitated online environments where people with migraine can log in nearly any night of the week to connect with others who “get it.”
“Being able to be caring, and sharing, fulfills a need,” says Kelly, who now volunteers as a trained group facilitator. “It certainly made a huge difference in my life.”
How community support helps with migraine health
Social support is different from having a best friend or a full social calendar. Social supports are the people in our lives who help us cope with stress by being open, trustworthy, nonjudgmental, and caring.
Research shows that lack of such quality support is associated with health issues including depression, inflammation, and poor immune functioning. Conversely, research also shows that meaningful social support can decrease pain intensity and disability. According to some headache specialists, including the Jefferson Headache Center’s Dr. Simy Parikh, social support is so important that it is often the make-or-break factor for improving with migraine.
“Access to support plays a big role in health outcomes,” says Dr. Parikh. “Take two patients with the exact headache frequency and severity, Patient A and Patient B. If one patient has support, they can go on working. If they don’t, they may have to get disability assistance.”
Try this: Take five minutes right now to reflect on the supportive people in your life and the needs they fill. Your answers will help you home in on your quality social supports.
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- Who in your life makes you feel emotionally supported? Who do you turn to for comfort? Who is helpful in a crisis or challenge?
- What about practical support? Who can you rely on for help with grocery shopping, babysitting, or making meals?
- Who do you ask for advice? Who helps you make decisions? Who will stand up for you?
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Obstacles to migraine social support
If you came up a little empty in the above exercise, you aren’t alone. People with migraine face many obstacles to finding quality social support, including:
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- Stigma and lack of understanding make people reluctant to discuss migraine with others
- Difficulty communicating the migraine experience can leave people feeling misunderstood
- Difficulty asking for help, or knowing what type of support they need
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Another obstacle is that migraine support groups are often more unhelpful than uplifting, especially those online. People with migraine often deal with powerful emotions like anger, guilt, and sadness as a result of living with their disease. Sharing difficult feelings is important and healthy. But too much “doom and gloom” sinks the spirits and can turn a migraine support forum toxic.
Miles for Migraine decided to turn that around. Four years ago, having listened to the feedback of its membership, the advocacy organization came to understand both the community need for support and the barriers, and became determined to start its own support groups. But to be successful, the groups would need one crucial component: Authentic positivity. For that, Miles for Migraine came up with a plan.
Inside an online migraine support group
First, Miles for Migraine hand-selected a few patient, even-tempered people living with migraine who were committed to being group leaders — like Kelly Amspacher. Those volunteers underwent a training course from the U.S. Pain Foundation to work on communication skills and learn about meeting the specific needs of people with chronic pain. “We had training on stages of grief, psychological support, role playing for handling people who are having difficult times or monopolizing the conversation,” remembers Kelly. Miles for Migraine works hard to run support groups that help people to feel better and where the group is not brought down.
The results are groups that are intimate, friendly, nurturing, and uplifting. Nearly a dozen Miles for Migraine support groups currently exist, including groups for men with migraine and for parents of youth with migraine. Since the start of the pandemic, the groups are also virtual — a change that participants have embraced. “Being able to attend, even if you aren’t feeling up to it, is important,” says Kelly. “If you just want to listen, we’re happy to have you. If you want to come in your pajamas that’s fine! Just show up as you are.”
The Care Tuner app has an entire module dedicated to Connectedness to help you find ways to engage with the people, work and activities that bring you joy. Learn more about Connection for Migraine activities here.
