Skip to Accessibility Tools Skip to Content Skip to Footer

Open letter to those who don’t have migraine

Migraine. I have come to loathe the word. Almost as much as I loathe what it does to me and as much as I loathe what having the condition has wrought on my life.

If you have migraine, you know what I mean. If you have not experienced migraine, you likely do not have a clear understanding of all it entails.

Here is the first thing to understand: Migraine does not equal headache.


Although crushing pain is the hallmark of my particular brand of migraine, it isn’t the only thing. Let me paint a window into my migrainous world:

A day or two before I get a full-on attack, the warning signals begin to appear:
• my vision gets blurry
• my ability to focus starts to falter
• any smell seems 10x stronger than it actually is
• waves of nausea hit randomly at any time of the day or night

Then the day before or just before the pain begins, the next batch of fun starts:
• any sound seems like it’s being blasted through an amplifier at AC/DC concert
• light feels like shards of glass penetrating my eyeballs
• my frontal lobe feels like it’s been replaced by thick mud
• my neck is so stiff it feels like it could break with the slightest touch

And then the full-on attack descends. By this time, I’ve already taken medication that is supposed to “abort” the migraine. But that rarely happens. I am, however, still fortunate enough that it lessens the impacts. What happens is still debilitating. Here is my attempt to describe the pain:

First, light the surface of your brain on fire. Then, surround your brain with barbed wire. Now, put your head into a large vise and have someone tighten it until it feels as though your head will crack. And then, just for good measure, have a friend drive a large curved spike through the top right side of your skull, and have them keep hammering until the spike emerges from your right eyeball.

Oh, yeah, it’s a rare kind of fun.

As I mentioned, I’m one of the more fortunate people whom the “abortive” medications help. So, eventually, the pain levels get turned down to more of a flicker of flame, less pointy barbed wire, less pressure and only insistent throbbing to remind me where that spike is located.

But that is just the pain component. I still have to try to manage the other aspects of migraine: my vision is blurry, my eyes are sensitive to light, my ears to sound, my nose to smells. My brain is such mush that it’s exhausting to focus on anything – conversations, reading, grocery-shopping, anything.

Knowing that I am the no-fun girl when I’m in the throes of migraine, I’ve bowed out of meeting up with friends and family. I’ve tried to explain why, but oftentimes, I get the sense that friends and family think I’m just making excuses. It couldn’t be that bad, could it? (Fellow migraine sufferers, you’d recognize the unspoken it’s-just-a-headache-take-some-ibuprofen-and-get-on-with-it approach.)

Over time, as the migraines have become more frequent and more debilitating, I hear less and less from my friends and family. My boyfriend also seems to have given up.

I ask myself why? I think that the people I know are fairly enlightened compassionate individuals. They took the Ice Bucket Challenge; they take part in the Ride to Conquer Cancer; they grow facial hair for Movember, they support causes such as Alzheimer’s research, diabetes awareness and Crohn’s disease. So, why do they seemingly check out when it comes to supporting a loved one who is flattened regularly by migraine?

My hope is that it is a lack of understanding.

I will do what I can to improve their lack of understanding. But I also know that there is much stigma when it comes to migraine. (Good article on this at HuffPo http://huff.to/lfvcST)

At the moment – day two of a migraine attack – it all seems rather daunting to deal with. But, one thing I have learned from migraine is the ability to soldier on, manage what I can and try to move forward, if only by inches.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Rema
    5 years ago

    Hi Adiuntum,
    What you and others have to say on this matter resonates so well with me. You feel so isolated especially when you think the people closest to you should at least be able to empathize and give you some acknowledgement of what you’re suffering.

    About a year ago I finally started standing up for myself as a migrainer. I constantly would push myself to accomodate other people’s expectations of me as you feel like a social outcast for not participating. Finally one day I had to let a friend know I just couldn’t do something because of my migraines and to my dismay she actually said to me: “you’d feel better if you just have a more positive attitude. Get up and get out of the house everyday like I do and you’ll feel better”. I felt like I’d had the wind knocked out of me. I was speechless.

    Because I was so emotional about her response, I decided to be fair, rather than just re-act I would send her some information educating her about what a migrainer has going in inside their body and mind as a result of this disease. To my dismay, her response was to send me a post about the benefits of “being positive”. We’re no longer friends and that’s Ok. I realised that I was carrying around so much guilt because I couldn’t be what those around me expected of me and owning my disability and standing up for myself has uplifted me and given me more determination to triumph.
    My one saving grace through the years has been a close friend who is also a migraine sufferer and we are each others support system.
    Keep on fighting the good fight.
    Rema

  • MigraineSal
    5 years ago

    What a fantastic article . . . thank you so much for posting it when you did as it has made me realise that I missed the warning signs I was getting yesterday and could have saved myself having the the level of migraine I have had since early doors this morning, if I had just paid attention. I did take my usual preventative measures for my neck pain (which can trigger a migraine) and went into a dark / cool room and meditated on ice, which induced a lovely deep sleep . . . at least until the migraine work me up !

    I have printed your article for my Migraine Folder and will be reading it regularly so that I don’t ignore key warning signals in the future !

  • Sally
    5 years ago

    After suffering with migraine for over 20 years and holding down a demanding job the entire time, I was abruptly let go because one of my bosses felt I was making the whole thing up and that I was no longer dependable. I had been in a bad cycle with daily headaches and had to spend a week at a headache treatment center. This was nearly 4 years ago and I’m still having a hard time getting past it.

  • Jan Piller
    5 years ago

    Very well written. You’ve described a very typical migraine here based on descriptions of other migraineurs I know. It’s sad to think that so many people have endured even worse – to the point of suicide even. I believe unless you experience a migraine (or daily migraine for 4 years) you’ll never empathize.

  • Lisa Robin Benson moderator
    5 years ago

    Hi Adiuntum,

    Beautifully written and well described. Perhaps you could share this with your family and friends? Your words are very powerful, and sometimes it’s easier to express things in writing that it is to do it verbally.

    Thank you for sharing.
    Lisa

  • Anne
    5 years ago

    well described 🙂 I think if we could physically manifest the same symptoms we were feeling – like our eyeball popped out and our brain burst through the sides of our heads and we fell to the floor, people would get it 🙂 It is very frustrating, but until you’ve experience the pain and all that comes with a migraine, you’ll never truly understand. I ask people if they’ve ever broken a bone, because I have and the pain was less than my migraines.

  • Katie M. Golden moderator
    5 years ago

    This is an absolutely fantastic description of how Migraines affect people. I often get asked what to do when it seems that family or friends don’t understand the condition. I usually tell them to share an article or someone else’s story because it can often “click” when coming from a third party.

    I will definitely be directing people to share your story with their family as you’ve so eloquently described the pain.

    Thank you for sharing!
    -Katie
    Migraine.com Moderator

  • tiggmom1
    5 years ago

    Great post! I’ve definitely had my share of people with the whole “take an ibuprofen and get over it” mentality. I need help with the Catch 22 behavior I’m getting from my family and co-workers. If I can possibly drag myself to work, I will (mainly to save my sick days for those #10 headaches where I truly can’t move). When people see me at work, managing to get thru the day, they say “it must not be that bad, after all you’re here at work, it must be in your head.” However if I tell them all the times I’m truly in pain and feel awful, I get the “you’re a malingerer” look and I’m not believed. So it seems that if I try to make the best of things, I’m not believed. If I’m truly honest, again I’m not believed. I think it does go back to migraines being an invisible disease, since people can’t see a physical symptom happening to you, they don’t believe it. Has anyone else found a good way of coping with this?

    Thanks! Beth

  • Poll