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.


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