A while ago I did a post on how a very British lady called Sarah Colwill developed a Chinese accent after a severe migraine. The post included a reference to how Ms Colwill lost friends because they thought she was pretending (read more here).
At the end of that post, there was a video of two Australian ladies who both developed Irish accents. One of the ladies underwent a brain scan, and the results showed there were some abnormalities with her brain. Poor thing, (at the 14th minute of the episode) she burst into tears – not only was she being told her brain was not normal – but – her MAIN REASON for the tears, as she explained it, was a strange relief: it was objective proof, after many years of suspicion, that she was not faking.
UGH.
If you’ve ever had migraines, or another chronic pain condition, then the chances are your symptoms are often invisible to others.
Sometimes they might even be intermittent, which means you can be smiling as you walk through the office door in the morning, and then struggling to form a sentence and staggering towards the exit an hour or two later…
I can see how this might look iffy to an outsider… especially an unempathetic, uncurious stranger. And, when I’m super honest, I can admit that even I wasn’t overly sympathetic to other people’s migraines when I was younger. I vividly recall that I assumed another lady was lying about her migraine because she didn’t look “sick enough” based on my personal standards at that time.
[I will never stop apologizing to her, wherever she is, for my ignorance: “I have a migraine” is not a lie.]
Migraine is often referred to as a “bad headache” by those who don’t know better. It’s a casual comment, but it can feel crushingly dismissive to anyone who has experienced the whole-mind-body-soul-catastrophe that is a migraine event.
My bad migraines are hemiplegic, which means I become partially paralyzed down one side of my body – but even that’s not overly obvious to others. The projectile vomiting which should assist in clarifying how sick I am, still isn’t always enough (I remember one time, a stranger told me it was too early in the morning to be walking the street drunk (as I was vomiting into a bush thanks to the sudden onset of a migraine while wearing a business suit) or the time a taxi driver refused me service because he thought I was drug-affected.)
Then there’s family and friends. They are generally more patient and understanding, but not always. There’s a whole book that I reviewed that talks about the drama of the “not tonight honey, I have a headache” debacle, and another, “A memoir of migraine survival“, in which the migraine-affected-author writes about her (ex)boyfriend telling her to drive herself home and her tennis coach calling her lazy.
But what about healthcare professionals? Surely they should be the most understanding? Not always. And this dismissiveness takes the distress up a notch. I’ve written before about doctors behaving badly (here) and the ‘Not Tonight’ post included this quote from migraineur Cindy McCain: “The first doctor I went to basically said, ‘Well, you’re just neurotic, you’re just stressed, your husband’s a senator. Go home, put your feet up, and have a drink.’ […] What affected me the most was being talked to like I was dumb. That infuriated me.”
Sigh.
[Oh! And don’t forget the advertising executives, especially those of the past, who were anything but sympathetic in their sales pitches: Migraines – as advertised.]
My point is: sometimes one of the worst things about being chronically ill is people not believing that you ARE ill.
I’m not alone in this double-discomfort.
Here are three other blog posts I have come across which mirror the emotions beautifully (or horribly sadly – depending on how you look at it). Each post deserves to be read in full:
What If – Waltzing With Migraine: “No one wants to hear about your headache. Do you even really have a headache? […] What if they had believed me?”
Fragments from the Migraine Archive | Another Spectrum: “Migraine does not always follow the textbook. […] They speak to the quiet endurance of being disbelieved, the civic cost of diagnostic rigidity, and the emotional labor of explaining what cannot be easily explained. […] they ask, gently but firmly: What if we believed people the first time?“
A tough break and a wow moment| painintheBECK: “….I thanked him for believing me & his other patients. When he said, ‘of course I believe you!’ I had to explain how many times a patient like me has to explain and re-explain and advocate for ourselves because doctors do not believe.”
Lastly – a short while ago, a comment was left on a book review, in which Boozilla said this:
Once I was in the ER in a terrible situation, and the nurse said, this is going to hurt. I said, I get migraines. His face drained and he said, OH GOD. That is the gold standard of pain. Then he smiled and said, no worries.
Just like the lady who wept with relief that she had a brain scan to show she was not faking, or the interaction with a medical professional who ‘gets it’, these sorts of moments of recognition are often as fleeting and ephemeral as a flown-feather, but land as heavy as an iron anchor; their resounding thump leaves a migraine-patient feeling seen and heard and understood.
Here’s hoping there are more “I believe you” moments, and a lot less doubt, shoulder shrugs, and “deal with it” comments.
It’s the main reason I keep tippity-tappetty-ing away at my keyboard: I hope I can raise awareness about the nightmares that migraine-peeps go through, so that there will be more empathy and understanding.
I see you.
I get you.
And I’m sending you lots of digital hugs, gentle light and laughter, and healing vibes galore.
Take care taking care, Linda x
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PS – If you are keen to try to find your own way ahead, improve the way that you can advocate for yourself or improve communications with those around you in general, here’s links to 7 of my prior posts that include some tips and tricks you can try, in alphabetical order (just because):
Death by papercut (managing micro-aggressions)
How do you respond to pain-ignorance?
The Mindful Migraine 
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