Some people refuse to take migraine seriously or downplay its symptoms in others.
Sarah Alexander-Georgeson shares 5 tips to communicate the true impact of this condition.
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If you live with a chronic condition, I bet you've heard a long list of "remedies" and "cures" from those unqualified to give them. These same people may have dismissed your illness to your face and/or refused to take it seriously.
Getting others to understand what you’re going through can be difficult. Especially when your peers think they already know what you're going to say.
People unaffected by chronic conditions will often overlook how bad they can be.
Migraine is often misunderstood
A migraine isn’t just a headache.
Sitting in a dark room won't make everything better.
And sleep isn’t a cure.
I have received so many comments about how I "should just get on with it" when it feels like my brain is trying to escape from my skull. Sometimes, I can't even open my eyes.
It’s not necessary. Living with migraine can be debilitating. Once one has struck, no matter how much I want to continue my day, I can't. Migraine takes over everything.
I am lucky that my family and friends understand how bad a migraine attack can be. They do not question the steps I have to take to get as comfortable as possible to allow the agony to subside.
An attack can come out of nowhere, often on a day when I have lots planned and plenty to do. It’s almost as if the disease knows I am busy and tries to steal those hours away from me. If I have to cancel plans with loved ones because I am having a migraine, they understand, and we rearrange.
In fact, it happened this week. I was meant to go to lunch with a friend but woke up, and my head was throbbing. I wanted to see her as I’d missed her for months, but she knew I wasn’t well. Instead, she visited me a few days later, which I appreciated.
You need to keep people like this to keep in your life. Those who question the validity of your conditions will make you feel worse.
Even some healthcare professionals don’t always get it
For a few of us, it's not only their friends and family who won't take migraine seriously. Even some medical professionals can be shockingly dismissive. In my case, it took ten years before my migraines were given the proper attention or treatment.
I had multiple appointments and did everything suggested. I changed my diet, exercised more, and stopped consuming caffeine - but my migraine attacks continued.
My mum had to take me to A&E on three separate occasions because the pain in my head was so intense. I remember lying across some chairs in the emergency room with my sunglasses on, crying because the pain was so awful.
After a few trips to A&E, my GP referred me to a neurologist who treated me
then and there.
I can't describe the relief I felt to finally be believed. I even hugged the consultant before leaving his office!
How to help others understand migraine
Some people may not be sympathetic to your condition or understand the extent of it. Here are a few tried-and-tested tips that might help you communicate with them:
1. Keep a migraine diary to record symptoms, patterns, and moods
I write down the dates I have a flare-up in the notes section of my phone. I write down where the pain is, how severe it is, how long it lasts, and any more information my doctor might find helpful.
2. Send over reading material to friends, family, and interested co-workers
If a friend or family member doesn’t understand your condition, send them some links on the subject. Resources like The Migraine Trust offer a wealth of information about the illness.
3. Be honest about your feelings when people dismiss your illness
Have an open conversation about migraine and how it makes you feel. Then segue into how it affects your mental health when you feel misunderstood.
4. Write a letter when conversations are difficult or keep getting derailed
Talking can be hard sometimes, so putting things in writing can be helpful. This could be to your doctor, your sister, or anyone else you need to understand. Explain what you’re going through and what it’s like living with the condition.
5. Keep asking for help
It took me so long to get a diagnosis, but I did in the end. So keep returning to your doctor, or consider changing practices if you feel unheard. You have to be your own advocate for your health.
It's tough when you're suffering from a condition and you're not supported by those you need the most. Not everybody will understand, but don't let that stop you from getting help!
NPS-IE-NP-00617 October 2022