As ever with the Chronic Life series, this post is made up of my opinions based on my experiences of living with Chronic Migraine and now, it turns out, Chiari. Some days I feel positive, so days I rant & some days I fall silent altogether. This post may be a little on the ranty side but I’d love to hear your views in the comments (where I approve comments individually to ensure that trolls get no joy from me or anyone commenting). 💜 K x
Migraine is a strange thing. Unlike rarer disorders, it is a disease that a lot of people have heard of. It has been my experience though that while lots of people THINK they know exactly what Migraine is, many actually do not.
The public in general may not be aware that Migraine impacts sufferers in a variety of ways and the frequency of attacks ranges from the Episodic Migraine sufferer who experiences one or two attacks a year to patients like me at the far end of the Chronic spectrum, for whom Migraine is a daily struggle. Other points on the Migraine spectrum include Episodic patients who experience anywhere up to 14 days of head pain per month with 7 of them being migrainous in nature (anywhere above this is termed to be Chronic) and the Chronic Migraine sufferer who has 15 or more days of head pain per month with at least 8 being migrainous, who may have pain free days in between. These are just a few examples of how the frequency of attacks can vary from patient to patient.
I have noticed that despite Migraine impacting on people’s lives to a variety of extents, many people view Migraine as a minor inconvenience and expect every sufferer to only have attacks now and again and to bounce right back immediately after an attack. I have even (rarely, I’m glad to say) heard people who themselves live with Episodic Migraine express disbelief that Migraine could be so frequent and debilitating that it constitutes a disability. The attitude that ‘their Migraine can’t possibly be that bad, I manage mine fine’ is galling for a Chronic sufferer to hear. It adds to the stigma surrounding Migraine and the stigma is a huge problem.
The belief that Chronic Migraine ‘can’t be that bad’ makes life even harder for sufferers. Trying to convince others of how just how devastating an impact Migraine is having on our lives is exhausting and stressful. It is for this reason that I can not forgive the occasional Episodic sufferer who contributes to the misconception that Migraine is no big deal and is easily dealt with – they should know better. The fact that someone is an Episodic sufferer rather than a Chronic one doesn’t make them better/more determined/harder working people; it just makes them luckier. I’m glad to say that I have only personally experienced this a handful of times IRL in the 25 years since my first migraine. The majority of people who have ever had a migraine attack or watched a loved one go through one are horrified and empathetic to the plight of people for whom attacks have become chronic or even daily.
With regards to the attacks themselves, the widely believed ‘it’s just a headache’ misconception is infuriating for all Migraine sufferers and is just plain wrong. A headache doesn’t make you cry, vomit, experience visual disturbances, vertigo, aphasia….I could go on! The idea that you can just ‘push through’ suggests that a Migraine can be ignored and defeated by sheer force of will – it can’t, believe me, I’ve tried. The World Health Organisation recognised years ago that severe Migraine attacks are no joke; WHO classified them as comparable to quadriplegia or active psychosis in terms of how debilitating they are.
Part of the problem is that people seem to struggle to recognise the severity and scale of impact of any condition that they can’t physically see just with the use of their eyeballs. Migraine sufferers naturally withdraw from the world when symptoms are at their worst. Add to this the fact that many sufferers, including myself, struggle to summon the energy to try to persuade others of the reality of our situation when we know from experience that all too often, we are met with incomprehension or downright disbelief.
I’ve been diagnosed in recent months as having a Chiari Malformation. The vast majority of people in my life had never heard of it. So I show them diagrams and give them a brief explanation or a more detailed one if it’s someone who is particularly interested. No one so far has tried to tell me that ‘it’s not that bad’ or ‘my aunt had that and when she lost weight it cleared right up’ or ‘you just need to get out more’. Living with a condition that is relatively rare or unheard of by the public (and sometimes even by members of the medical profession) has it’s own set of difficulties. But I’ve been asking myself recently – would life actually be a little easier for people with Migraine if the world and her mother didn’t already think they know what Migraine is?
Wishing you good luck and happy days,
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