Methotexate // Image via Wikipedia
It’s kind of perfect that it’s Invisible Illness Week, with the way I’ve been feeling for the last few days. I don’t know if it’s a reaction to the flu shot I got Friday, a flare, side effects from my increased dose of the yellow dart (aka methotrexate) or something else entirely, but this week has not been a good one, disease-wise. I’ve been extra sore, extra exhausted, nauseous (blech) and headache-y, plus the tendons in my left hand — which had been doing OK after a prednisone taper — have decided that they were just kidding about feeling better. Awesome.
(So, I took a break from writing this to paint my nails, and my left hand is so bad, holding the polish brush to paint my right hand left me in tears. I’ll be phoning my rheumatologist in the morning. Geez.)
The point is this: No one around me (with the giant exception of my husband) knows how hard this day was for me. Not my boss, not my co-workers, not any of the people I interviewed today, not my neighbours. No one.
The invisible part of invisible illness is a mixed blessing. The fact that no one knows it’s a Bad Day™ is both a good and bad thing. To the average person, I look like a vibrant, healthy twenty something. And that’s a good thing because, as much as I am all about advocating for those with chronic illness, it’s nice to have the option not to do that all the time (or, at least, when my psoriasis isn’t visibly flaring). But I struggled today. Things that should have been easy were hard: opening a door, holding an empty mug in my left hand, sitting in my chair at work, painting my nails, focusing on conversations. Today, I could have used help. But, other than my husband, no one offered—not even those who know I have a chronic illness. And I think that’s because—and I know everyone out there with an invisible illness has heard this at least once—I don’t look sick.
That makes things hard sometimes. I don’t like asking for help, but that’s on me. Having a chronic illness has forced me to change how I approach things, and I think that’s OK—at least now. I won’t lie: I struggled with that for a long time. But everyone has something they’re dealing with; life isn’t perfect, even for healthy people. And that’s OK, too. I’m not thankful I got sick, but if there is one think I’m thankful it did for me, I’m thankful for that. I’m thankful I can recognize life is hard for everyone and maybe we should all do what we can to make it easier, to make people feel happier (or maybe just less sad) and less alone.
It’s a thought, anyway.