As someone who has suffered for 7 years with vestibular migraines, the past 2 of which I have been stuck in a constant migraine, I feel isolated by the migraine community as a whole. I don't have episodic attacks. My migraines start out of the blue and last for months or years, all day everyday. I have found no relief from preventative medication (all of which increased my migraine severity rather than minimize it, and were utterly intolerable) and lifestyle changes haven't helped in the slightest. Everything within my power to control hasn't brought any relief at all.
My vestibular migraine makes me constantly dizzy, and most days I am bed bound. Occasionally I feel well enough to sit up for about 5 days, then feel worse again. The severity of my symptoms fluctuates with my menstrual cycle, and I believe hormones are my biggest, possibly only, trigger. I am 30 years old and totally reliant on my parents who care for me. I am debilitated by this condition, and turned to the migraine community for support. However, I feel more isolated and judged by other migraine sufferers than those without this condition. We champion people who can push through their symptoms, continue work or care for their kids, as if these people are stronger, fighters who don't allow migraine to dictate their lives. This attitude implicitly suggests those of us who physically cannot push through are weak, or allowing our condition to debilitate us, which is not true. I have felt so much pressure to push myself, often feeling I am to blame, that I'm being too inactive, or not taking control of my lifestyle, thus not getting better. I know this is false, but have had these things suggested to me by other migraine patients. I feel weak, doomed, cowardly, for not being able to work, leave the house, or even look after myself. Because lifestyle changes haven't helped me, triggers are unidentifiable, and I cannot avoid them, I feel hopeless and doomed to this existence. I envy those who can manage triggers or see improvement from changing diet, stress, exercise etc. Some migraine sufferers can't avoid triggers, or even identify them because this condition isn't well understood. We don't all share the common triggers or even common symptoms. The severity of our symptoms varies hugely and some are more debilitated than others.
I think it's time that, as well as making heroes of those who are able to achieve things, that we also praise those whose best achievement might simply be spending the day sat up. Understanding that those who cannot work, or care for children, are just as strong because what they are facing is just as tough. They aren't lazy or weak for not being able to get out of bed. Their challenge is just as equal to a parent battling migraine to look after a child. Looking after yourself can be a battlefield.
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