Remember when you would get sidelined with an illness when you were in school? Whether it was the flu, strep, really anything that resulted in you being home sick for more than two days. It was common knowledge that staying home sucked because you had to do all the annoying makeup work. No one envied you staying home sick did they?
What’s interesting to me is the reactions to my saying, “I’m chronically ill so I can’t work per se but my job is recovering my health at this time.” It is significantly more grueling than having a virus and yet, people act like I’m on some kind of vacation. There is no malintent behind the comment. We just don’t live in a society that discusses the true severity and burden of chronic illness. If you know someone who has chronic illness, the chances are more likely that the individual understands you aren’t living your best life at a resort. If someone doesn’t have anyone ill in their life, you can tell because they approach it with the nonchalance of picking lint off a sweater.
My favorite is getting congratulated. We live in an area of SoCal where staying hone means you’ve “made it”.
I think for my case specifically is that not only is my condition invisible (to some degree, EDS people see me hold anything and ask if I have EDS) but I love a good outfit and a red lip. I’ve perfected minimal effort, maximum impact. Furthermore, whether I’m having an outing or making a silly craft video, I’m putting in more effort than those guys in Strong Man competitions who look like they’re about to lift the poop right out of themselves due to exertion. I went and got real great at faking my level of health but that often gets me in more trouble than not because people make assumptions. You also have to realize if I don’t have my walker and my health/occupation doesn’t come up, I don’t just randomly sprinkle in that I have POTS. Every once in a while, people who meet me on a good health day will ask if I want to do a not so ADA compliant outing. That’s when the awkward part kicks in. Like, “funny story…I can’t stand for long and walking more than 100 yards at a time is a bit risky…so it’s a soft pass for me…”
When the chronically ill have a good day, we are like a dog getting a bunch of new toys dumped out around them. WHAT TO DO WITH ALL THIS OPPORTUNITY?! A good day is fleeting so you have to maximize them sometimes. So if I’m out or crafting, that shows I’m having a good day. I want to make the best of that day because I have no idea when I’ll get another one. My being in public or doing one of my videos is the real life version of a instagram page as it pertains to a highlight reel. You are only seeing me at my best. If it were anything less, you wouldn’t be seeing me. I know many other chronically ill people who understand that all too well.
I was so excited about taking these pictures because based off the responses I get to saying I’m medically unable to work, this is what I think people assume it is like for me to be home. I’m not great at being a housewife in OC. 98% of my time is very unglamorous. My hair? Up so I can lay down for hours at a time and not worry about tangling it. Makeup? Lotion. Wardrobe? I wear my grandma’s old button up cause it’s so comfy. I can also easily roll the sleeves up or down depending on my body temperature needs. I usually wear compression leggings or compression socks. Sometimes both. She is beauty. She is grace. She stands up slow, just in case.
I’m really blessed that my husband’s career removes some of the financial stresses of having a chronically ill spouse but most aren’t in that position. Medical bills can be extremely out of hand and out of pocket. When you are too sick to work and have the added stress of how you’ll be making ends meet and then some random human says your life must be fun because you don’t work? Highly tone deaf. I remember being prescribed one of the more serious drugs used to treat some symptoms of POTS and it was about $300 IF you have great insurance and up to $1,350 for those who don’t. Do you understand how absurd that is? Medication more expensive than some people’s rent or mortgages?! You also have to factor in the doctor visits and/or hospital stays. Medical supplies. It adds up.
Long story kind of short, do not project your lazy desire to not work on the chronically ill. If you’re trying to keep the tone positive and light, there are other routes to take. We work 24/7. We don’t get to take PTO. We do not have holidays off. We can’t take sick days. We didn’t choose to get sick. We don’t choose to stay home cause we love Netflix. We physically aren’t able (that’s why we call them DISablities). If someone ever expresses that they aren’t able to work due to medical conditions, hear them. You can commend their strength to go through what they are going through. You can say, “oh that must be really tough” and then wish them well. A simple acknowledging nod. There are 99 ways to respond, “that must be nice” aint one.
potsiemouth 