A stranger told me he could tell I had a migraine the other day. Something about my eyelids, he said. I was conflicted about how to take it. Of course, in many ways, the fact that migraine is an invisible disease makes it very hard to convince others of its serious nature. How, after all, can we possibly be struggling with such crippling pain when we look absolutely fine? This conflict – between looking fine and feeling terrible – adds weight to the widespread belief that we are fakers.
That said, I don’t think any of us would actually want to look as bad as we feel, even if doing so were to serve as the world’s most effective PSA for migraine. I hate to admit that my vanity would get in the way.
If migraine symptoms were visible
We posted an article recently asking our community members to describe what migraine would look like if it were visible. The comments were amazing and terrifying. People described bleeding eyes, knives sticking out of their heads, ice picks, vices, contorted expressions, and much more. The visuals were spot-on and heartbreaking. It was an interesting exercise, though, to consider what it might be like for the world to be able to actually see how we are feeling. If others could have a window into the intensity of our pain, the level of compassion and understanding on the topic of migraine would undoubtedly grow exponentially.
When others see the signs
Thankfully or not, our pain is largely invisible. In the midst of an attack, or when one is unfolding, many of us actually show a sign or two that are perhaps noticeable to those who know us well. I’ve heard many people say that a loved one is often the first to tip them off to an impending attack. My husband has played that role, notifying me that my eyes look a little off. And sure enough, soon after I will have a full-on attack.
When I was staying at an inpatient headache clinic, my roommate had the wildest visual manifestations of migraine I have ever witnessed. One side of her face would become paralyzed (stroke-like) and her eye would turn black and blue, as if she’d been punched. When the attack resolved, so, too, would her normal expressive face.
For many of us who battle chronic migraine, there is another potential visible sign of having the condition. It’s one we share with others who wrestle with chronic pain of any sort – the challenge of aging early. Due to the frequency and severity of pain, our faces and bodies may reflect the cumulative effect of a lifetime of attacks (hours upon hours of wincing pain can lead to furrowed brows and wrinkles around the eyes, tight necks and shoulders might lead to a hunched posture, and so on). It’s no real surprise that years of clenched jaws, and hours spent in the fetal position will have some effect on how we carry ourselves. It surely takes its toll and shows itself eventually in one way or another.
Just as with the normal wrinkles and gray hairs that are beginning to show themselves as I approach my fifties, I try to remember that I have earned every single one. They are signs of earned wisdom and experience. They are lessons learned after brushes with some of life’s most difficult challenges.
So, rather than being defensive when a stranger sees an attack on my face, I will strive to remember that my face and body are windows into my experience. Just as a drooping eyelid might portend an oncoming attack, some of the lines of my face that have been created from my endlessly clenched jaw are badges of honor proving my strength, resilience and survival in the face of extreme trauma and pain.
Do you have any visible signs that foretell a migraine? Can loved ones tell when you are about to have an attack or when you are in pain? Does your body show cumulative signs of being a migraine warrior?