migrainletter

12 things to not say to a chronic migraineur, but 10 things you should

Migraine.com published a list of 12 things to not say to a chronic migraineur. Very good, I thought, but what about a more positive spin? Things people can do to HELP you, to make your life easier, to keep your spirits up and to remind you that you have a support network.

The internet is full of 'what not to say' and 'what not to do' - that's not very helpful! I had a bit of an epiphany last night where I realised I had reached rock-bottom. I don't talk about my migraines anywhere else but here on my blog really, I don't bring up bad things about me to anyone, I don't want to put a dampener on anyone, and everyone has their own personal struggles.

But this past week has really tested me. On top of the whole 'wearing sunglasses in the office daily' thing and not being invited to various social gatherings, being forgotten about, I have felt my situation belittled. Normally I put other people before me and my situation - no matter how little, if it matters to a friend, it matters to me - but less and less I find my friends doing the same for me.

It really hurt. Yesterday evening I felt at the end of my tether. 

Then I realised, people don't know what to do. Either that, or they're really not worth of having me and my stupid health burden in my life.

Perhaps, they don't know how to be, or what to say. I could write yet another list of 'what not to say to a migraineur' or post some photo quote intentioning how I feel, but instead inspired by migraine.com's article, I've decided to take action in a more useful and positive way. At least I can turn chronic daily migraine into something useful for my fellow sufferers.

Here are 10 simple things you can say to remind your migraineur relative/partner/friend/colleague that you are there for them, even if you don't understand what they're going through.

1. "How are you?"
A very simple text message can go so much farther than you think, but mean it. You may not have heard from your friend for a while, they might take days to reply to your texts, but it doesn't mean they're not talking to you. Our lives are for the most-part, very simple and reduced from what they used to be, so you might want to tone down how much fun you're having right now, but it's so so lovely to know you are thinking of us and care. We don't mean to ignore people or take ages to get back to you but when getting out of bed is one of many struggles we face daily you have to cut us some slack. You may have some stuff going on too, but if you can put it aside, just to send us a sweet little message, you are a true friend to a migraineur!

For extra points you might think about a phone call, but that may make the migraineur worse (like me). Noise right next to ears is a huge no-no for some of us.

2. "Shall we have a quiet night in at your place curled up gossiping and watching crap films?"
I am, at the moment, terrified of bars on a Saturday night - noise, navigating drunk people, public transport - a sensory overload, and plenty of others are in this position too. So I find myself staying in during weekends. It gets lonely, someone coming into my world willingly would really cheer me up. Invite yourself over! We assume you don't want to come because we're not exactly a barrel of laughs, we're probably a bit depressed too. If your migraineur friend was in hospital you'd want to visit, so why not visit their home and bring the (quietish) party with you? It's cheaper too!

3. "Sorry for shouting, I forget I do that when I have conference calls at my desk."
You may not know you work with a migraineur, but if you do, we know you don't realise how sensitive we are. I find myself moving to work in quiet rooms and lonely spaces to avoid people laughing and holding loud telephone calls - the people making the noise don't realise, it's not ignorance in the slightest but it takes a lot of courage for a migraineur to talk about their condition for fear of offending someone even though it affects their health.

4. "Would you like me to come to a medical appointment with you?"
This isn't so appropriate for me, but I know other suffers would really appreciate the support. This isn't just for migraineurs - if you have any friend dealing with something alone, be a friend and let them know you are supporting them.

5. "Tell me about your migraines."
The image above is how we chronic migraineurs think we are viewed. We're broken records, only talking to our migraine support group buddies because they get it like nobody else does. Knowledge is power, it has been said. If someone - say my boss, a friend, a family member - wanted to know more about this, I would feel very touched and I'm sure I'm not the only one. It's not that people don't care about us, they don't understand us or how to be. Breaking that cycle makes things better for everyone!

6. "I hope you get to the bottom of it."
A simple message of support - no "have you tried...?". Believe me, we probably have tried most things, but a smile and supportive well-wish would be most welcome. It's such a nice alternative to "take a pill" or "you should try..."

7. "Would you like to come to ...X?"
We cancel so much that people don't invite us to things anymore. But chronic migraine does have its good days, or indeed sometimes we will cope because leaving our comfort zone is worth the pain. Daytime stuff is usually better, but even if you expect us to say 'no', it's the gesture that makes us feel remembered, and you may be pleasantly surprised - I, for one, have a mostly background migraine all the time and use these better days as much as I can. Perhaps you and your migraineur friend can come up with alternatives to find something you could do together socially.

8. "Can I help you with shopping/take the kids for a few hours/etc.?"
Life is one of migraine's biggest enemies. We need sustenance and going to the supermarket can bring up all kinds of problems: you have to get there, you have to navigate a fluorescent-lit warehouse full of noisy people, children, crowds and queuing - and that's after you've schlepped around and found everything, and also remembered everything you went for. I don't have children but maybe your migraineur friend does and would appreciate an hour's sleep, knowing their child was having fun, were safe, and weren't seeing your suffer.

9. "I miss you."
Life kinda leaves people like us behind, we see our friends less and go into ourselves because we know we're not the hellraisers we used to be. But we're still the same people, we can laugh and love and cry just like we used to. Rekindle that friendship that used to revolve around partying and turn it into something new. Why should you be the one to make the first move? Your migraineur's self-confidence is rock-bottom and their entire life has changed, they may assume you don't care. Make sure that you don't make your migraineur feel bad for going off the radar - they're on a journey you hopefully won't experience yourself so don't belittle it. Instead, move forward together.

10." Is there anything I can read or do to better understand?"
Perhaps you and your migraineur could go through their medications together, or they could send you some internet links, like this one I wrote about my personal migraine experience. Some other useful ones are migraine.com, Chronic Migraine Awareness, or you could request to join this open Facebook group aimed at raising awareness of migraines.  There's a world of information on Google that's not all boring sciency stuff. Take five minutes to have a coffee, sit down, and understand. Knowing that you are on their side in battle will mean the world to them.

If you know a migraineur, no matter their relationship to you, why not do one of the above things, right now? Make somebody's day.

Do you agree? What else could people say to support you and help you better?

One of my upcoming blog posts will be from my fiancé Mark, who is keen to share his experience of living with me and my migraines and how it has affected our lives, and will impact on our future.

Read '12 Things You Shouldn't Say To A Chronic Migraineur' on Migraine.com here.