In this corner...
I don’t know about you, but I’m getting tired of being my own advocate. Like many of us who suffer from Chronic Migraine, I am constantly tracking down new treatments, pleading with insurance companies for proper drug coverage and calling my neurologist – who forgot I was holding for them today and went home with me still on hold.
As someone who has never had a chronic condition before, I had no idea how much time it takes in your daily life – not just to suffer with it, but to seek relief from suffering. Things I thought would be a no-brainer, like, “of course my doctor’s office will ensure that my Botox is done every three months” become asking my doctor for the third time if his office has submitted my request, only to discover that they haven’t. Having to watch my diet, monitor how I’m feeling to make sure I don’t trigger an attack, do my stretches, go to bed on time, take my medication on time, breathe, not make my pontail too tight, wear my sunglasses and, did I drink enough water today?
The hardest part, or the saddest part, of advocating, is the advocating to friends and family. Although they may not mean it, I am made to feel like I have to prove how hard I am working to get better and how sick I actually am. I have to run the list of things I’ve tried to every new person I have a conversation with about my condition, as they’re convinced I’m clearly not doing it right. With my family, there are several members who have made it clear that I’m just weak and not trying hard enough. Of course, they’ve never experienced one migraine, let alone wave after wave of them, but they’re sure they would do better. They don’t believe the seriousness of it – like when I crashed my car into a pole and was convinced my vertigo aided it, a friend, whom I respect, chided me for being dramatic – as though I’m enjoying this. Just because you can’t see the incredible head pain, nausea, vertigo, crippling depression, sensitivity to light, sensitivity to sound, body aches and extreme fatigue doesn’t must mean I’m just imagining it. Or, doing it for attention. I mean, what a depressing and exhausting way to get attention.
My mother, whom I know if genuinely trying to help, was lecturing me on how I should tell my doctor this and that, and, I stopped her. I told her what she could do to help me are things that don’t involve pushing me or making me feel like I’m not trying hard enough. I asked her to please do her own research and make calls on my behalf. Today, she did and I was pleasantly surprised.
So, to my fellow self-advocates, I send prayers of strength, because until there is a cure, we’re all going to get a lot more practice being in our own corner.
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