I used to think illness awareness day/week/year promotions were a little pointless. Developing a chronic ( hopefully temporary but currently chronic ) condition changed my opinion on this. After all, I have had migraine my entire adult life yet I had never even heard of chronic migraine until I went to the GP and asked for help in 2018. Even then, I felt as though this condition was something that I had brought on myself, that my anxiety had caused and therefore that it was simply a big red flag saying ‘mentally unstable person here’.
After accepting the diagnosis, I couldn’t get my head around the idea that I had done nothing wrong to cause this, that it was simply, unfortunately, something that was happening. I struggled to share with anyone and worried when I did that they would look at me differently or question my sanity. The shame and embarrassment ran deep. It has taken me a full year, a whole year since I first saw a neurologist who explained what was happening to me, to come around to the fact that I didn’t do this to myself. This is why awareness is so important for migraine.
As recently as thirty years ago we still thought of migraine as being both psychological and somatic, linked to perfectionism and the Type A personality
Migraine carries with it heavy baggage, stemming from its past connection with ideas about hysteria and nervous women. As recently as thirty years ago we still thought of migraine as being both psychological and somatic, linked to perfectionism and the Type A personality. This isn’t to say that migraine and stress aren’t related, or that people with migraine might be more likely to be anxious. However, correlation is NOT causation, and just because you are stressed doesn’t mean that this neurological disorder is your fault. The cultural assumptions that migraine is just a bad headache, or that only highly strung females get them certainly don’t help a newly diagnosed person as they try to navigate their new world.
Migraine is so very much more than just a headache. It is a neurological disorder that causes intermittent disability. How much a person with migraine suffers can shift throughout their life and is on a spectrum from one or two attacks in their life, all the way through to chronic intractable daily migraine. Yes, every day.
If I had been aware of chronic migraine when I had episodic migraine ( occasional attacks, fewer than 14 a month ) then I might, maybe, have been able to prevent the shift to chronic migraine. There is no cure for migraine, at the moment. However, there are ways to manage it. Frustratingly, the more attacks you have, the more likely you are to have more attacks ( not fair is it? ). If you can start a preventative when your attacks begin to increase in frequency, then you stand a chance of preventing the slide into chronic migraine. I didn’t know that, so I didn’t advocate for myself.
Migraine is so very much more than just a headache. It is a neurological disorder that causes intermittent disability.
With all this in mind, what are we to do as a community? Talk about migraine. I know, I know, you already feel like you talk about nothing but migraine all day anyway if you have CM. Think about who you talk about it with though - friends and family who already understand. How about posting on Facebook about what it is like to live with migraine? Or chatting about it with people you don’t know as well.
If you’re like me you’re already making excuses or rolling your eyes! We assume that it will just bring the mood down, make things awkward, or that no one wants to hear it. You could be right… but what if you’re wrong? What if the person you are talking to, or who reads your post, always thought migraine was a headache and you educated them on this disorder? What if you chat to someone who has migraines every now and then, and they then know to see their Dr if their attacks change or become more frequent? We just don’t know the impact we could have.
If you want to learn more about how to be an advocate, Migraine Strong has a great post about it over here.
As part of the awareness week, Headache Australia also has a variety of talks available to watch on their website at the moment. I found this one particularly interesting as it gives a great overview of migraine - what it is, and how we might manage it.
I wish I had known more about migraine three years ago. It could have saved me countless painful hours and a whole lot of shame and unhappiness. My hope is that as more of us discuss it openly we can put the past to bed once and for all, and push for more research into this crippling condition.
I’m curious, do you discuss your migraine or keep it private? Do your friends and colleagues know how you suffer?