The comfort of community

The comfort of community

When I started this blog many years ago, it was my little secret.  I had fallen out of the habit of writing a diary, opting instead to write long letters to my friends. (Yes, letters that were handwritten and sent in the mail—I used to send and receive at least four letters a week.)  So instead of chronicling my life in a journal, I would tell my friends about what was going on in my life by writing in longhand on stationery.  I wasn’t entirely truthful in those letters, though: I rarely, if ever, mentioned the migraine attacks that were becoming very frequent occurrences in my life.

I decided to look into blogging. At first the main reason to do that rather than keep a journal was because of how much more I could get written if I typed using a computer keyboard instead of using longhand on paper. I created a new email address not associated with my real self at all, created a blog, and then proceeded to write whatever I wanted to about what it was really  like to live with migraine disease. I didn’t try to fill it with feel-good tips, nor did I dispense medical advice I have no right or credentials to share. Instead, I just talked about what it feels like to have this chronic illness. Any time I felt as if I was putting myself out there too much—any time I felt more vulnerable than was comfortable—I would write a drier post citing something I had learned about migraine.

To my utter surprise, people started to read the blog. I had learned statistics about how common migraine was, but, apart from a couple of friends and family members, I had never really talked at length to anyone else with the illness. All of a sudden this whole new world opened up. I felt less isolated. I felt safer. I felt, in a way, at home, surrounding myself with an online community that actually knew what my life was like.

Fast forward to 2014, and I’ve now spent more years with my blog hosted on migraine.com than I did hosting it independently.  Some of the bloggers I read and admired most in my very early days (namely Kerrie Smyres of The Daily Headache) are now colleagues of mine here at migraine.com.  I am fortunate to be a part of this community where we support one another and encourage each other to take care of ourselves, to explore various treatment options, to give ourselves a break when we’re being too hard on ourselves.

Each day, through conversations in the migraine.com fora or on the Facebook page or in blog comments, I see more and more migraineurs reaching out to one another.  I see so many comments from people who say things like, “I thought I was the only one!” or “I am so glad I’m not alone.”  Reading things like that makes my heart soar. I am so glad we have found one another.

If you know someone who is suffering from migraine but seems isolated, consider reaching out to him or her. Let him/her know that you, too, have this illness and are there to talk.  You never know whom you’ll touch with just a small gesture of kindness and compassion.

No matter how long you’ve been keeping up with the online migraine community, I want to thank you for making this a safe, welcoming, comforting, and helpful place.  We are all better off because we are in this together.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • Holly H.
    4 years ago

    I also value the sense of community on this site. Migraine is by its very nature isolating with our long lists of triggers and sensitivity to all kinds of what is normal for others… not to mention the days and weeks we have to unplug until we are functional to some degree again. We deal with disabling aspects, systemic effects, challenges specific to migraines (light can hurt? sound can hurt?), and, yes, that there is no pill to take that will get rid of it. Add those up, and that world outside our darkened windows may not even see us often enough to get to know us, much less gain any degree of understanding. But y’all understand, because we live it within the aspects of our own personal journey.

  • Luna
    4 years ago

    Dear Community, Just a little story that you can probably relate to. Went to a meeting and potluck Saturday. Smells bother me big time but a young lady had on what smelled to me like gardenia water. UGGGGHH
    When cleaning up after the meal a friend remarked more than once about how good the beans I had fixed were. I remember wondering how to respond to that remark. Today, 2 days later, I realized that she was hinting at wanting to take home any beans I could spare. Then it took me 5 hours to figure out who to call to get her phone #. Just another person I need to tell “don’t hint” my migraine brain is too often unable to process normally. “The invisible dysfunction.” I’m ok. LOL

  • Vanessa
    4 years ago

    It really helps to know I’m not alone. I resist feeling sorry for myself and this community shares hope and experience and many ah-ha moments that help explain some of the weird stuff where I just hadn’t connected the dots yet. It seems like everything in my life is migraine-related somehow. Just today I heard that someone said of me, “If she come in [to work] can she do the exit interview.” I was really offended and said “IF SHE COMES IN HUH?” what’s up with that? well, I guess in reality it is an IF some days I just can’t make it and no one, not even me, know when those days will knock on my door and ruin my day. It just kinda sucks to think that people are talking about me behind my back like that. But, I guess there is good reason… it is what it is.

  • Jkr
    4 years ago

    I suffer from very severe migraines and I live in Los Angeles. For many years we’ve been looking for a live support group like every other pain seems to have and we always get diverted to just a pain management support group which is not what I need. Finding this site has been amazing for me. To be able to read other people’s stories and say “oh I could have written that one!” It’s been great! I’m curious, have you ever been to a live support group and if you have did you find it helpful? I’ve been approached by a facility to start one due to my story, which someday I will write. I have to find the words.

  • janenez
    4 years ago

    I have a friend who has Parkinson’s. He belongs to an online community and they are doing something for New Years about making a “Parkinson’s Covenant” – kind of like a personalized New Years resolution as to how you plan on coping with this disease better in the New Year. Goals and resolutions in regards to healthy habits and attitudes. I think that would make a wonderful discussion for us migraineurs too. What do you all think?

  • Luna
    4 years ago

    Migraine.com is really important to us that live alone and don’t have much community locally. I am so sensitive to smells that my interactions with others is limited to twice a week in the colder months. Warmer months when interaction can be done outdoors am not as limited. To often I come on the site and there is nothing new to read. I realize that people are either busy taking advantage of their good time or aren’t able to communicate. I pray that 2015 is a good year for all of us.

  • MigraineSal
    4 years ago

    T-H-A-N-K Y-O-U soooo much for coming up with the fantastic idea of setting up this community . . . it certainly gave me a life line when I was in the early stages of suffering with migraines and awaiting formal diagnosis and treatment plan.

    It has also continued to help me learn how to manage my individual form of migraines and has given me a vehicle to share my knowledge and experiences to help others ease their pain perhaps trying my methods. A friend recommend Migraine.com to me and I have recommended it to others and will continue to do so and I am sure I am just one of a small number doing the same and growing this invaluable community x

  • Lisa Robin Benson moderator
    4 years ago

    Janet,

    I can so relate! I’m very glad to be working with you and the other great writers on this site, and be in conversation with so many in the community.

    Lisa

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