The dichotomy of the recent ‘news’ hype and spin regarding Congresswoman Michele Bachmann’s Migraine Disease has revealed some unsavory truths. You might be surprised what those truths really are…
Society’s opinion on Migraine Disease and Migraine patients is now in full view of us all – patients, caregivers/supporters and non-Migraineurs alike. Gone are the hushed comments and sly glances. People who are uneducated about Migraine don’t care to take the time learn about them, yet now feel freed to comment and judge the experience of patients everywhere and at any time. Physicians and nurses who are not Migraine literate feel free to “educate” the public with old or incorrect information, and because they are medical personnel society believes them without question.
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Personal judgments – no matter how uneducated – used to be kept private, but are now being brought into the daylight with little if any apologies. Because Americans who consider themselves journalists wrote it, citizens believe it and feel it is then appropriate to talk about it however they choose. Right or wrong has ceased to have merit. Instead, the personal struggles that Migraineurs deal with is now fodder for assumptions, comments, discussions, arguments and even laughter by those with an agenda they wish to further.
I am upset because society tolerates – even encourages – this kind of sensationalism without regard for anyone that might be hurt in the process.
Who is being hurt besides Michele Bachmann? All of us, especially Migraineurs.
First, with 37 Million Migraineurs in the US, do you think we aren’t hearing the insults? Do you really think we are not keeping very close track of who is saying what and how they are saying it? Do you not think that we take this personally? Here’s a truth – we do.
Secondly, it is this perpetuation of outdated information, stigma, insinuations and outright lies which keeps Migraineurs from being able to get appropriate medical treatment, support and understanding from physicians, friends and family that allow us to live our optimal lives. In the end, this can literally cost people their lives and their livelihoods. Yes, there is much at stake here, much more than someone will see at first glance.
Another truth which is surfacing is how evidently that society has forgotten the difference between a Journalist and a Blogger…
A Journalist’s job is to seek out and report the complete facts of a story. Nothing more, nothing less. A journalist who says he/she is out to change the world is not a journalist. That person has an agenda and is using it. Do not be fooled.
My job as a Blogger is to mix journalism with observation, experience and opinion. I most definitely have an agenda. My purpose is to educate, advocate and support as well as to generate thoughtful conversation that will hopefully lead toward a better world for all of us as Migraineurs. I always finish a piece and say to myself – “Okay, prove me wrong”. In this manner I try to provide more than one perspective for you to consider. Well, today may be a little different 🙂
What makes me sad is that I am not just writing today about shameful uneducated individuals who choose to purposefully hurt others in the name of journalism and politics by using insinuating and insulting language and half truths, but that I am seeing the same thing happen within the Migraine community at large.
This is what I see:
I see disabled chronic Migraineurs angry because Ms. Bachmann tells the world that her Migraine attacks won’t compensate her ability to function as Commander in Chief. They feel that she should tell the world how debilitating they assume her attacks are, and what a horrible, life changing disease Migraine truly is. How our lives have been stolen from us and will never be the same. How we can’t think, or talk, or function and end up in the hospital with heavy narcotics that won’t work for us. How we lose jobs and can’t work. How our families suffer, relationships suffer… how we suffer and some choose instead to die because their torment is so terrible and no one can or will help them no matter where they search. We want her to talk about things like aphasia, Alice in Wonderland Syndrome, paralysis and stroke. We are human, so we assume that Ms. Bachmann’s experience is the same as our experience and we want the world to know that this is a very serious condition worthy of understanding and sympathy, research and help.
I see those who are not disabled by their disease angry because they don’t want to lose their jobs as a result of occasional or less severe Migraine attacks. They see the insinuations of 200 yr old hysteria and want the world to know that they are strong and able-bodied despite their disease… they can do anything any other person can do (and if they’re women…. backwards!) They are incensed that just because they sometimes have Migraines, they are being unfairly judged as disabled, inadequate, frail or somehow unworthy of pursuing whatever in life they choose to pursue. They’re mad because they don’t want their lives and livelihoods unfairly taken from them too!
I see non-Migraineurs being led like lambs to the slaughter. I live on a farm and know a herd when I see it. People close their eyes to the truth because it takes too much work to find it, and it’s too much fun to play with the misinformation. I see passionate people who are involved in politics finding and using any perceived difference or weakness they can find – real or imagined – because they want to win, no matter the cost, to the person or others like her. I see passionate people who are involved politically trying to put blinders on the lambs because it is easier than talking about more difficult issues at hand… or the truth.
What is the truth?
The truth is that Migraine is a neurologic disease. There are hundreds of neurologic diseases out there and millions of people living with them and functioning – yes – even in places of power and government, including presidents. Ms. Bachmann happens to be one of those in a place of power. But folks, no matter your political affiliations, you have to stop and think – she must have been pretty capable to get where she is in the first place. Maybe someone should ask her if that has changed? To my knowledge, no one as yet has.
The truth is that no two Migraineurs are the same. Migraine is a spectrum as varied as a rainbow. Attacks can range from barely noticeable to (rarely) stroke and death. Most of us fall somewhere in-between. Some Migraineurs never miss a day of work. Others haven’t been able to hold a job in years. Some Migraineurs are disabled during their attacks by abnormal neurological functions such as the inability to speak or see or think. Most others do not. To assume that someone’s attacks are the same as ours does everyone a great disservice. Has anyone asked Ms. Bachmann about her particular symptoms?
Migraineurs often take medicines to prevent their attacks. This is how we gain good management and control of our lives. If something gets out of hand, we go to the doctor. (I went to the doctor recently for a kidney infection too) Some doctors can give us the medicine we need to abort an attack in the office. Sometimes, especially if we’re out of town or our doctor doesn’t carry the medicine we need, we have no choice but go to the ER because that is where the medication is, not because we are dying. If we’re in the middle of an attack, quiet and low lights are normal and helpful for nearly every one of us as sensitivity to those things are hallmarks of our disease.
We have triggers that can sometimes set the stage for an attack. Triggers range from riding in an airplane or other travel, to foods we eat, or not getting enough sleep. A non-Migraineur will often associate an attack with stress because that is what society has been erroneously taught “causes” a “headache” – they will not notice the trigger that is ultimately responsible because they don’t know what a Migraine trigger is.
The truth is that it is unfair for any of us as individuals to project our own condition – healthy or Migraineur – on anyone else. Our experience is ours alone. Ms. Bachmann’s is hers alone. I believe that whether she can stand the stress of the position she seeks will soon be known, as the rigors of a campaign must be tremendous and trigger-laden.
Perhaps, like me you’re sick of seeing the perpetuation of stigma and misinformation. If so, please take heed: Migraineurs need to get out of their chairs and be a part of the solution to the problem of a horribly mis-informed society. We are the ones with the most to lose, and the most to gain. If we don’t get to the business of educating non-Migraineurs… who will?
“What we’re saying today is that you’re either part of the solution, or you’re part of the problem.” Eldridge Cleaver