“You look fine.” For some reason, this seems to be a typical response to telling a friend or a loved one that you have a horrible migraine. Suddenly you must justify your condition.
I think all chronic migraine sufferers have experienced insensitive and sometimes outrageous comments made by those around us. A migraine can be making you feel like your head is about to split open, but all of its strength and vengeance is unfortunately invisible to those around us.
Those who do not understand what it is to live with migraine pain — or live in fear of the next attack — simply see our outward appearance and assume we must be “fine.”
It is frustrating and hurtful when someone you confide in does not understand your struggle and pain, and some may even question if you are in fact suffering at all. For some reason, people assume whatever they don’t understand is not worthy of their empathy.
I have found it helpful to try and communicate very carefully when talking about my migraines. How you explain your migraine to someone can actually help them understand your condition better, and allow them to imagine what it would be like if they themselves were dealing with the same condition.
Walk a Mile in My Shoes
Here are five key points you should make when explaining your migraines to someone.
1. Migraines Are Not Just Headaches
Comparing a headache to a migraine is like comparing a soft summer rain to a hurricane. Unless you have felt this level of pain, you cannot make a fair judgement.
Migraines are a neurological condition and are thought to involve abnormal functioning of the brain's blood vessels. Approximately 37 million Americans suffer with migraines, and women represent 70 percent of those diagnosed.
When explaining, I say, “Imagine a pain where you seriously wonder if something is happening within your head that will kill you. It’s like something is exploding. You can’t see well. Light makes it worse. You are in so much pain you can’t hold down food.”
Often, understanding begins to blossom in people when I actually describe what the pain fundamentally does to me.
2. You Can't Tell by Looking at Me
FYI, you can’t “see” someone’s pain. I look fine because I push on through my day most of the time and continue with as much of my life as I can.
I say, “If this struck you several days per month, wouldn’t you try and keep living your life too? It doesn’t mean I am not in agony. It means I am trying to keep going. If sometimes I’m not much fun to be with, remember I’m still me — stuck inside this body that is going through incredible pain.”
3. Migraine Attacks Are Variable and Unpredictable
Just because I was at that barbeque yesterday and feeling fine, does not mean that I didn’t wake up today with that dreaded veil of pressure and ever-increasing pain in my head.
Migraines come on for various reasons (stress, hormonal changes throughout the month, diet, drinking a glass of wine, etc.) so there is no indicator one day that the next will also be pain-free. I must live my life day-by-day, never knowing when I will be under attack.
4. Though There Are Treatments, Nothing Cures Migraines
So far, at least in my experience, decreasing the number of migraine attacks per month and sometimes limiting the severity is the best I can hope for.
There are several medications (like Excedrin migraine, Aspirin, Imitrex, Aleve and even Botox) to treat migraine, but there is no cure as of yet.
5. I Need Your Compassion
I say, “Imagine unbearable pain that can strike any time. What kind of compassion would you need from your friends and family? I don’t want anyone’s pity, but I long for compassion.”
Everyone appreciates having someone sympathize when they are in excruciating pain, but nobody claims to have a migraine to get sympathy.
In fact, anyone who would suggest that probably lacks the compassion required to provide sympathy. What I seek is understanding and compassion.
If you are surrounded by people who don’t understand your migraines, you are not alone. People simply do not think about what they are implying or how their words can hurt or even insult you.
Barbara Leech is a mother of four who has battled lupus for more than 30 years. Also diagnosed with migraine, fibromyalgia and Hashimoto’s thyroiditis, she considers herself a survivor of all things: chronic illness, divorce, starting over. She is passionate about family, faith and small victories. You can find more of her writing on NewLifeOutlook.