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?
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