Support groups

Day #6 Blog Prompt: Support groups – local AHMA chapters serving every major U.S. city

I originally got this idea for local support groups about 15 years ago, shortly after my first cluster headache attack. I was so sick all the time. I was unable to work, do housework, care for our kids, or really care for myself. If family and friends had not been willing and able to help out, my family would have suffered much more.

I desperately longed for the kind of emotional and practical help such support groups might provide. At the time I was bitterly angry at our church family for not reaching out to us. We frequently missed church because I was sleeping off the drugs I’d been given at the ER just hours before. We were regular members. My husband was on the finance committee and I was part of the praise team. Our children attended the Christian school affiliated with the church. It was a small church and everyone knew what was going on with my health. We were not called on once. There were no prayer chains, meal deliveries, or even so much as our names on the prayer list. Meanwhile, other members with health conditions that carried less stigma were cared for, visited in the hospital and in their homes. There was really no excuse.

I guess there is still a part of me that is angry about this. I can forgive one church for such oversight. But over the years it kept happening. One church after another would claim to care for the sick, the widows, and orphans, but not ever really do anything unless a member had cancer or a bad accident. If the churches we belong to will not acknowledge the severity of our disability and/or do not have the resources to offer practical support, then I say we form our own support groups of patients and volunteers to assist each other during our rough patches.

As great as online support groups are, there is nothing like face-to-face contact. I have wanted local headache support groups for so very long. I’ve approached the subject with a few local health care providers. They all express positive thoughts about the idea, and say they would recommend patients. However, I have yet to find one who has the time to devote to such a group.

By necessity, these support groups would have to be local chapters organized by healthier migraineurs, their loved ones, and patient advocates. They could start out as a monthly support groups, yet could become so much more. How many times have you read a post from someone who is really struggling and wished you lived a little closer so you could go with them to their next appointment, provide a home-cooked meal, or look after their little ones? Call me a bleeding heart, but I read these kinds of posts every week.

My vision goes beyond the idea of support groups that conduct regular meetings. Some migraineurs are homebound due to daily pain or comorbid conditions that prevent them from getting out. These patients would need extra help. At the very least they would need a ride or someone to call on them. I think of it more as a support co-op in which healthier volunteers off practical support to those who are struggling more until they are well enough to pitch in, too.

So I’m calling out my local pain pals. Caylyn, Diana, Melanie, Kimberly, Connie, Teresa, Jennifer, Amber, and anyone else I missed…you know who you are. Let’s schedule a date to get together and create a plan to get this idea off the ground in Kansas City. The “call me” button is on the left.

AHMA leadership team, I’m appealing to you, too. It would be awesome if Kansas City could be a test case for these kinds of support groups all over the country, creating local AHMA chapters in every major city. Please get in touch if you share my vision or have input to offer.

The 2014 Migraine and Headache Awareness Month, is dedicated to Dreaming of a World without Migraine and Headache Disorders. The 2014 Migraine and Headache Awareness Month Blog Challenge is a project of American Headache & Migraine Association.