I try not to criticize people for judging others by appearance because I’ve done it myself. Used to do it a lot, if I’m honest. My eyes were opened a while back when Lisa Adams wrote this post, which helped me realize that I was doing this, and stop (if not completely, at least more often).
Lisa’s post was written as she underwent chemotherapy for the breast cancer that would kill her in March, 2015. Her condition was terminal. She never hid this fact.
I’ve recently gotten more insight into this…what? Phenomenon? Behavior? I’m not sure what to call it. My situation is (very) different from Lisa’s, but her words resonate for me more than ever now.
Because, you see, I don’t look sick. If my husband is to be believed (and he’s the most honest person I know), I look better than I have in a long while. This makes sense for a couple of reasons.
My heart condition didn’t come on me suddenly. It developed over a period of time, and looking back, it was probably pretty severe as much as a year before it was diagnosed. So my body was struggling, and of course this was reflected in my appearance.
Now, with the help of drugs (better living through chemistry!), my heart is still at about a third of optimal functionality, but it is getting help.
I’m also retaining some fluid, which makes me look less waif-ish. I’ve always been skinny, but now I don’t look unhealthily so. Of course, it’s because my heart and kidneys aren’t getting rid of all the fluid in my body that they should, but the surface result is that I look fine. Better than I did six months ago.
Just as Lisa describes, I’m making more of an effort, too. I don’t want to appear ill to anyone, most importantly to myself.
So what doesn’t show? The fatigue. The fact that walking even a short distance at anywhere near a reasonable pace makes me feel like I’ve run a mile. The times my heart races and I sit still for fear of dropping dead. The frustration at trying to navigate a healthcare system that seems purpose-built to keep people sick. The ejection fraction that worries everyone who understands it. The examining everything I eat and drink with a virtual microscope because sodium can have a real and frighteningly negative effect on my heart and kidneys.
I reported a while back that I’d acquired a disabled parking placard. It has come in handy a few times, and has also given me additional perspective on this “judging by appearance” thing. There was the old guy who gave me a disapproving look in the supermarket parking lot. “Wanna compare heart conditions?” I asked him. He shrugged and gave me an apologetic smile as he meandered off.
Then there was the male human being (I didn’t spend years in corporate PR for nothing!) who went out of his way to drive up to us to yell (literally) that I was “handicapped in the head.” If it wouldn’t have put my life at risk, I would have read him the riot act.
Look, my purpose here is not to engender pity. And if you’re reading this, you’re not like Parking Lot Man—quite the opposite, in fact. But I hope that by putting this out there, it might reach even one person who is like I was before Lisa pointed it out to me and I got to experience this “but you don’t look sick” thing myself.
Thank you for reading. Thank you for your kindness and support. It means the world to me.
I understand this all too well… and was forced to stop the judgments long ago.I get the “but you don’t look sick” comment all the time. Some days I smile with gratitude, others days… *heavy heart* I’d take all the bad for you any day, sweetie. We all would. I love you, Erin.
❤️❤️❤️
Our society shames people who are ill. We are not productive. We are not aiding the fight.
The odd double standard is that if you don’t look ill, how dare you take time off or use services for the disabled? If you do look ill people stare and either look away, ashamed, or feel they are free to question you about every detail of your disease as if you are a living exhibit of it.
When people are lucky enough to not have ever been seriously ill or to have had a serious injury, they tell you the battle can be fought in your mind.
“I’ve never been sick a day in my life,” they proclaim. “It’s all in the attitude.”
These people are blessed idiots and sometimes just lucky assholes.
I hide my illness as much as I can. For a very long time, I was deeply ashamed of it.
I am so very tired most of the time. The condition itself makes me that way. It has a negative impact on my heart by causing my heart rate to hover between 120 – 140 beats per minute all the time. It pounds even harder when I try to sleep at night.
The drugs I’m on, a fistful every day, make me tired.
People don’t see tired or pain or my heart maniacally beating in my chest. If they see me out, that means I am with the people I love and I am happy. I’ll be smiling and talking and laughing because I am living.
Erin is another of my heroes. She was before she started telling us the story of her illness. But she has earned my respect, my protectiveness and my love two-fold for fighting her battle out loud.
I love you and I hate that you have to go though this.
Jennifer – I could’ve written that same post you did… I’ve experienced this too and agree with everything you said (and while I don’t have a heart condition, I could relate to what you were saying, Erin). I’ve had several back surgeries – I have scoliosis and a number of things wrong with my spine (including the neck)… I live in terrible pain. Back when I was on daily high levels of opiates, my husband *judged* me (he’s now my EX husband! LOL) and he has brainwashed our daughter into thinking I’m just lazy because I’m not working. Well I didn’t attend all of those years of college so I could sit at home feeling useless. I’ve learned not to feel useless and I can help others in different ways… lending support via a FB group I have, or simply listening and responding to someone’s post… or perhaps a phone call. I’m a kind person and went into social work because I enjoy helping others. It took me a long time to learn how to accept help from others, but now I know most people WANT to help. For those that make judgments, they’re lucky they haven’t experienced a terrible chronic illness and/or pain.
In the meantime, those of us with chronic illness/pain have to endure the ridiculous comments others make… some folks don’t mean it the way we take it, but there are far too many that do judge.
As always, I enjoyed your blog-post, Erin… and am enjoying reading all the comments as well.
Cathy, I do all I can on support groups as well. People lose core friends and family when they have long term diseases.
At the same time, the ones that stick around or the new friends you make, are the best you’ll find.
Sometimes all anyone needs is to vent or just see that someone out there is going through the same thing. That we aren’t alone. And you aren’t.
My late wife had cancer for 7 years and was undergoing chemotherapy for most of that time. And most of that time she didn’t look sick at all. I was the only one who knew the toll the chemo was taking on her because she didn’t believe in complaining to anyone but me. She got very tired of people telling her how good she looked, but she never said a word about how she really felt. She just smiled and thanked them. Even after she died, people would tell me that she never looked sick. They just didn’t understand. Sometimes I think none of us do until it happens to us or to someone we love.
I think that’s very true. Sometimes it can feel like someone is telling you you’re being sick wrong or something if you don’t look sick. I’m so sorry for your loss.