As someone living with chronic migraine, an often misrepresented and stigmatized disease, I do a LOT of awareness posts, not just during the month delegated as Migraine and Headache Disorder Awareness Month (June), but year round…because my disease doesn’t just disappear when awareness month ends. It’s 24/7, 365; the unasked for genetic gift that keeps on giving.
More often than not, those living with an illness are the ones who advocate for it for a few reasons:
▪ Because who knows it better than those affected by it most or those who specialize in treating it?
▪ Because misconceptions and stigma about many invisible disorders and chronic illnesses abound among the general public (and frequently among those in the medical field) to the point that even some of us living with it believe them.
▪ Because all too often, if we don’t, no one else will.
So I had to share the story this beautiful post written by my sister Daphne in response to an Awareness Month graphic I made last year. My sister is my light on dark days, the best friend and sister a girl could ever ask for, personal cheerleader, tear wiper (and she doesn’t get mad if I have a good, snotty cry on her shirt), empathetic listener of both good and bad news, and all-around awesome person. I’m well aware of how lucky I am to have a supportive family–I’ve met too many chronic sufferers who do not, and it hurts my heart for them.
If everyone were even half the person she is, the world would be a much kinder place.
She gets right to the heart of what awareness is about, for my illness and others.
“This is my sister Selena, whose life was changed several years ago when her migraines went from episodic to chronic. Now, I know people wonder: what is the point of an awareness campaign? Is it simply to raise money to fight a particular problem?
Awareness is defined as “knowledge or perception of a situation or fact”.
Therefore, at its most basic level, that is the point of an awareness campaign: to increase people’s knowledge that, for example, chronic daily migraine is a real thing. Or Fibromyalgia. Ehlers Danlos Syndrome. Chronic Fatigue Syndrome. There is a very long list of medical conditions that we aren’t aware of, because they simply aren’t part of our lives.
And that’s okay; we can be very, very grateful this is not our particular burden to bear. It isn’t morally wrong to be unaware of all the health conditions (mental or physical) that can derail people from the lives they had planned for themselves.
What’s not okay is using our ignorance as a shield to deny that this is someone else’s reality. We probably do it in self-defense; it’s easier to pretend that the person with Chronic Fatigue Syndrome is lazy and wants an excuse to stay in bed all day, than it is to accept that CFS is a real problem that could potentially affect you or those you love.
But denial doesn’t help us, and neither does blaming the sufferer for their illness; though it makes sense to take care of our bodies, a healthy lifestyle is no guarantee against these issues. And if you talk to the people in your life who suffer from chronic pain (you probably know more of them than you think), high on their list of challenges are the two attitudes I just named: denial and blame. It’s hard to deal with medical conditions that can leave even doctors stumped, to know that these illnesses will never truly go away; harder still is the knowledge that family and friends think you are exaggerating, making up problems where there are none, looking for an excuse to be lazy, attention seeking, could fix your problem if you would only try (insert solution here)… The list goes on.
So THAT is the point of an awareness campaign: to educate the general population so that when someone says, “I have Ehlers Danlos Syndrome, ” the person they are talking to can listen with compassion rather than doubt, belief rather than skepticism. Such a simple little thing, but what a difference it can make.”(Post written by Daphne Tatum)