Why Am I So Open About My Migraine Disease?

Chronic Migraine has stolen so much from my life. It has also given me much in return for all of the pain and stolen dreams. One of those great blessings I count each day is my audience here at Migraine.com.

Although many readers write to tell me they appreciate my openness, there are many times I have been laughed or sneered at because I have made my life and my health such an open book. Sadly, some of that has even come from other Migraineurs. I am a bit odd in this fashion, and my extended family shakes their heads in wonderment and asks me “Why on earth would you want to share THAT?”

There is however, a good reason I was nominated so many times for the TMI (Too Much Information) award at WEGO Health this year. There is virtually nothing about my health that I won’t share with someone who needs to hear it and I know how vitally important and even life saving it can be for a patient to read the unvarnished truth about their illness and recognize themselves and the things in their lives they can’t talk to other people about.

I know the importance of this because I was there once myself.

I had been told that I was “hopeless” and that there was nothing else to be done for me. Knowing I could not go on any longer suffering as I had, the only choice I saw was too horrific to think about. But life continuing on this way for 40 more years was just as horrific to consider. I needed that light at the end of the tunnel that meant there was still hope.

I felt empty handed and grasping at the darkness.

I despised the internet, but went online and found not only hope, but help. I found others like me and for the first time I didn’t feel completely alone. I learned more about my illnesses and how to live with them while seeking better management and treatment. I learned how to be a better patient.

Those patients who opened up their lives to me probably saved my life. Some know who they are, others do not because I didn’t always interact, but I was lurking and learning . They certainly saved my health and I know they definitely made my life infinitely better. As a result I was also able to help my kids. Then I went on to become active as an educator and advocate myself, just praying that I could help even one more person who was in the bad place I was when I started.

Has my openness ever come back to bite me?

You betcha.

Beyond the laughs and sneers, there is the stigma we all endure that is compounded when a million people know intimate details about your life vs. 10.

I’ve lost friends and a job over it.

You see, I nearly died from an accident while in the hospital, ironically for a Migraine. As a result, a good part of me feels that I am living on borrowed time. Each moment is an extra gift. In a sense, it feels like I have nothing to lose.

But, isn’t it funny how I can reveal personal things to perfect strangers or people I have never met, but when it comes to those I know and love, I clam up?

Honestly, I am afraid to reveal what I do online to people I know because I fear judgment. My doctors have no idea what I do. Only 1 or 2 people in the town in which we live have even an inkling of what I do all day long. My extended family barely knows I work online let alone for whom, and have little interest in what I have to say, though when they ask I open up to them. Ironically, this is totally okay with me because I think I would feel very strange if they knew all these details I share with you, my Migraine audience.

It’s like this: I feel that we are a part of a different kind of family. A reluctant part of a family we all wish we could disown, but family nonetheless. We read each other’s stories and nod our head in knowing understanding. We reach out to each other in compassion and empathy. We create bonds with people we’ve never met because we know that when we are in trouble, they are there waiting for us with open arms and encouragement. We agree with each other, and sometimes we disagree too. We share intimate details of our lives with each other, because doing so gives us the strength to go on. It is an outlet. But it is more than that. It is a different kind of relationship that I can’t really even describe.

This is my choice. For me. For my life, and my experiences.

If you see me write about a family member or friend, it is because we’ve discussed it and I have their permission. They did not choose to give intimate details of their lives online. Someday they may choose to, and because I know their lives so well and how helpful their experiences could be I encourage that, but that is up to them.

I did not choose this life. It chose me. Was given to me. I can either drown in sorrow and pity, or do something about it.

So, I choose to try…
This is my submission for the September 2012 Headache & Migraine Disease Blog Carnival. For more information about the Carnival visit: http://bit.ly/migrainecarnival.

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 (5)
  • Emily Guzan
    6 years ago

    Ellen,

    I’m commenting as part of Wego Health Activist Writer’s Month Challenge to let you know that this post is so inspirational to me!

    I am so grateful for your article, because I also made the decision to become more open about my migraine disease when I started my blog. It wasn’t easy at first. I also lost a job and nearly died in a hospital because of migraine disease, which is particularly why I found your post to be so poignant.

    I do tell people that I’m a migraine blogger but I wish I said it with more confidence and pride. Instead, I say it with almost some sort of shame, as if trying to connect to others regarding health concerns is a bad thing.

    I always find it easier to read and relate to writers like you because you are so open about your health. I generally find articles written by people who don’t share as much to be a bit less compelling because they aren’t as raw as the writers who leave it all on the page. I have been really inspired by that and have decided to be open about my health too. Thank you so much for this post Ellen!

  • lori
    7 years ago

    Thank you, Ellen. From the bottom of my heart. Thank you.

  • Cindi
    7 years ago

    Of course, I met you here, Ellen, and because you and I share so much of our life experiences with this disease, I was delighted to find you and your willingness to be so open. I am surprised that other MIGRAINEURS would choose to be so cold toward what you call TMI, for it is just that many search for. To know they are not alone in their pain. But over the years, I am also less sharing with friends and co-workers, chosing to say that it’s “not one of my better days” than much else. My children grew up with caring for me and now that they live outside of my home, they continue to call, bring a meal or hug, and are in short my life line!! But having iFriends like you has given me an entirely new dimention in this journey. Thanks for being you, Ellen.

  • Shari
    7 years ago

    I was so thankful when a family member who suffers from migraines e-mailed me about this website. I am both a longtime chronic daily sufferer and a healthcare worker who treats migraine patients. Your stories and those of others have helped me learn so much and give me so much help and hope. I too feel like I have a family who understands and am able to realize that so many things I have experienced have been symptoms of migraines. I have even cried reading some of the stories because I finally found other people who understand and suffer the way I do. I am fortunate to have some family members understand as they suffer from them or have seen me have a severe episode which required a trip to the ER. They do research on their own to try to help find any measures I may have missed over the years. Please do not stop sharing your knowledge and disease with others.

  • Benice
    7 years ago

    Thank you for writing and sharing your life and struggle. There are people in my life who suffer from migraines and I can tell them exactly how I feel. Yet if I mention I have a migraine to someone who knows nothing about this disease I have had very different reactions and some have been extremely unpleasant. I am so glad that you share with us. It makes me feel less isolated and very understood. Without people like you migraine would be far less understood.

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