If you live with a chronic condition, I can almost guarantee that you would have heard a long list of random ‘remedies’ and ‘cures’ from people not qualified to give them. You will likely also have experienced the feeling that your illness is being diminished because so many people don’t take it seriously.
This struggle of trying to get people to understand what you’re going through can be a difficult one, especially if the person you’re talking to has a preconceived idea of what you’re trying to explain.
People who are not affected by a chronic condition will often overlook just how bad it can be for those of us living with the condition.
Migraine can be easily misunderstood
A migraine isn’t just a headache.
I don’t just need to sit in a dark room for a few hours.
And sleep isn’t a cure.
I have received so many comments about how I should just “get on with things” when it feels like my brain is trying to escape from my skull and I’m unable to even open my eyes. It’s just not necessary. Living with migraine is debilitating and once one has struck, no matter how hard I try or want to continue with my day, I simply can’t. Migraine completely takes over.
I am very lucky that my family and friends understand just 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 was really looking forward to seeing her as I hadn’t in a few months, but she knew I wasn’t well. Instead she came to visit me a few days later which I really appreciated.
It’s people like that who you want to keep in your life, because people who constantly question the validity of your condition will only make you feel worse.
Even some healthcare professionals don’t always get it
For some it’s not just friends and family who do not take migraine seriously, but also some medical professionals. It took ten years before my migraines were properly treated by a doctor. I had multiple appointments, did everything that was asked of me, changed my diet, exercised, cut out caffeine etc., but my migraine attacks just continued.
My mum had to take me to A&E on three separate occasions because the pain in my head was so bad. I remember lying across some chairs in the emergency room with sunglasses on, eyes closed and crying because the pain was so awful.
After a few trips to A&E, my GP finally referred me to a neurologist who treated me instantly.
After all the years where my condition was misunderstood, I wasn’t expecting much, so I can’t describe the relief to finally be believed. I actually hugged the consultant before leaving his office.
How to help others understand migraine
If the people in your life are not sympathetic to your condition or you feel like they don’t understand, here are a few tried-and-tested tips that might help you communicate with them:
- Keep a diary. I write down the dates I have a flare up in the notes section of my phone. I write down where the pain is situated, how severe it is, how long it lasts and any more information I think my doctor might find useful.
- Reading material. If a friend or family member doesn’t understand your condition, find some relevant links on the subject and send them to them, if you think it would be beneficial. Resources like The Migraine Trust offer a wealth of information about the illness.
- Be honest. Have an open conversation about how the migraine makes you feel, not just your symptoms, but also how it affects your mental health and how you feel when you’re misunderstood.
- Write a letter. Talking can be hard sometimes, so putting things in writing can be helpful. This could be to your doctor, to your sister, or to anyone else who you need to understand. Explain what you’re going through and what it’s really like.
- Keep asking for help. It took me so long to get a diagnosis, but I did in the end. So keep going back to your doctor, and even consider changing doctors if you feel like you are not being heard. You have to be your own advocate for your health.
It’s really tough when you’re suffering with a condition and you feel as though the people who are meant to love and support you don’t. Unfortunately, not everybody will understand, but do not let that stop you from getting the help you need.
NPS-IE-NP-00082 September 2020