Written By Peggy Artman for Chronic Migraine Awareness Inc.
When I was first diagnosed with migraine, there were only a few resources available. It took me so long to get an accurate diagnosis, but my doctors didn’t educate me on my disease. They prescribed a preventive medication and an abortive medication, but that was all I knew. Around that time, some significant life changes were starting to happen. Because I never knew when a migraine attack was going to happen, it became disruptive, and I had to resign from my position at the company that I helped build. With all that time at home and my attacks became worse, I looked to the internet to do research. So, I joined an online community forum and became active in that community. It was so great to get educated about my disease as well as support. I was beginning to feel like these people online became a part of my life because they understood me. I had been so isolated at the time, and being sick at home every day had become depressing. I felt a sense of hopelessness about my migraine disease and didn’t feel like there was any purpose left in my life.
After spending time in a migraine disease community, the dynamics of the group began to change. As this happened, I started drifting away from the migraine community because I felt misunderstood online, and some people were unkind (this usually happens in groups.) I felt so alone during this time, and no one in my personal life understood me. I was unreliable to join in social activities because I never knew when I would get a migraine attack. This caused me to close up further. I had some bad experiences with a few doctors, and no one seemed able to understand that. I internalized so many feelings.
Now I realize that I’m a very determined and persistent person that can’t give up all hope. I guess I would call myself determined and persistent. So I slowly got back into the migraine community and discovered that there were lots of support groups and educational articles online to read. Gradually as I became more and more open, I selectively joined a few groups. I could relate to so many of the community members in their posts. I realized that things were changing for the better with migraine and headache communities. I also realized that other communities existed that I never knew about.
In 2019 CHAMP hosted a retreat for those with migraine and headache diseases. Although I wasn’t really feeling well during all the sessions, I sensed that the people there really understood and supported each other. They were working to remove the stigma of migraine disease, which seemed so important to me. After that retreat, I felt much more confident about finding my place in the broader migraine community. I was so thankful to see others like me, that lived in isolation too. It felt so warm and friendly. So I started slowly to begin to think that advocacy was a way for me to find a purpose in my pain. I began moderating a migraine community group and started feeling like I had more of a purpose in my life. I also have participated in other projects that continue to feel fulfilling. I have needed this kind of understanding and compassion for so many years. I now have things to look forward to with helping to advocate to eliminate the stigma of this disease. I am so thankful for this wonderful migraine and other headache disorders community, and I feel better equipped to cope with my disease. Thank you, migraine community!
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