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Being invisible, out in the open

Having an invisible illness and a social life doesn't always go hand in hand. First, there's a sort of bargaining: If I go out today, how likely am I to get a migraine attack tomorrow? What if I add in food/drinks/live music/dancing? That's almost guaranteed. Is this particular event worth that? What about the people going? Do they cause me stress? Is it worth it to see the ones I really want to if I'm starting off the event stressed and tense? Kid's birthday parties are the worst - loud, lots of salty snacks and sugary foods (both are triggers for me) and the stress of having to talk to people I don't know well for hours. But my kids don't know the toll it takes on me, because they love parties. So do I take them to their party and miss something else that day? Or just power through?


Second is the game plan: If I want to have a drink, one is probably ok as long as I don't eat any of my trigger foods. But if it's a loud dinner party for example, I shouldn't drink because the noise will definitely tip me over. If that cousin is there that I don't get along with, should I bring my own food and drinks to avoid any triggers all together?


Third is the preparation: Do I have what I need in case I have an attack while I'm out? Meds, water, a quiet place to sit for a while? An easy way out? Is it easier to just say home? (The answer is often yes) Is my everyday pain at a manageable enough level that maybe I won't get a migraine attack today? Should I buy a lottery ticket if that happens since it never happens?


Those three things are wrapped up in the guilt of making plans and then breaking them, as well as the frustration with myself that I can't just go and do what I want without always considering this invisible monkey on my back, waiting to strike when I make one wrong step. Do my friends think about all of this when they make plans? I doubt it, but I hope they remember me next time they're gathering because maybe this time will be the time I make it.

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Unknown member
Jan 24, 2020

I literally was just talking about how many questions I ask myself in a day because of my illness. How much my life has changed and how I as a human being have changed with it. It definitely feels like guilt and shame, but the only way we will know is if we reach out❤️

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