I went to see my physiotherapist today, my body mechanic. She manages all of my aches and pains and has been recently helping me with my ankle sprain. I’ve been seeing her for year, and we always chat about our lives while she treats me.
Today I mentioned the increasing struggles I’ve been having with my illness, and how my my medication isn’t really taming the beast anymore.
She said something that really touched a nerve in me. “Maybe the doctors aren’t taking you seriously because you’re such a happy, positive person. That’s a great quality, but maybe because of that they don’t think you’re really suffering.”
Let that one sink in for a minute.
The best way to manage my illness and reduce my stress level is to stay positive and try to maintain the best semblance of a normal life as I can. But that same approach is simultaneously making life more difficult for me because I’m not getting the treatment or accommodations that I need because I appear so happy, healthy, and normal.
It doesn’t bother me so much with strangers or co workers or people who don’t really know me intimately. The real jabs come from your family or close friends.
If I complain about driving an hour to get to a birthday dinner I get a heavy guilt trip. “It’s only one time!” my mom will say. Only that one time will cause me severe discomfort sitting in a car for that long. If the food triggers inflammation in my bowels, that’s a whole hour drive back home that I have to suffer in extreme pain and anxiety. Or I may become completely depleted and have to lie on the sofa for the rest of the day.
And it may be that one birthday for this year for one relative, but next week it will be another birthday, or a wedding, or an out of town visitor. When you have a large extended family, the social obligations are endless.
They don’t see me suffering from migraine symptoms for weeks. They don’t see me sleeping on the sofa for three hours in the afternoon because I’ve reached too far into my limited energy reservoir to visit with them. They don’t see the hours I may spend in the washroom on bad colitis days. They don’t see me wrestling with massage balls and foam rollers trying to fix my spine between therapy appointments. They don’t see the enormous painful ulcers that erupt in my mouth causing a red river every time I brush my teeth.
And when I try to explain, it falls on deaf ears. Seeing is believing, and they can see I’m fine.
And for my husband who does see it, he’s become a bit numb to it now, or else he is deliberately ignoring the obvious, because maybe he doesn’t want to admit my illness has progressed this far.
So while I struggle through this rough patch, I feel starved for empathy and understanding. Everyone has their own lives and problems, so why would they notice mine, when I’m so good at my masquerade.
So what you can do for me and for your friends and loved ones with invisible illness is believe us when we tell you we are in pain. Let us set the limits for our own bodies without the guilt trip. Don’t try to compare your temporary jet lag with our lifelong battle with fatigue. Don’t think we’re flaky because we can’t make your party if we’re feeling ill, but don’t stop inviting us to parties because we actually do want to go if our bodies allow us.
Please just be kind and be there.