Woman waves at a friend who carries an invisible burden

"Invisible Illness" Never Invisible, Always Illness

Invisible illness. It’s a term that sometimes gets thrown around for certain kinds of blood cancer. Yes, cancer, the big C, the unstoppable force, sometimes gets called an “invisible illness.” Sounds bonkers, no? But yet it is used because some blood cancers are, in reality, chronic illnesses and don’t ever really get “cured.” So it becomes a day-to-day fight and depending on the day, it can be more evident than a mole on the end of someone’s nose or almost invisible like the “wash your hands” sign in restaurant bathrooms.

Illness is never invisible to the person who has it

I’ve always hated the term “invisible illness,” frankly, because an illness is never invisible to the person who has it. If it was, then they wouldn’t even know they were ill, right? “Invisible illness” is actually a term that was coined to describe the way other people feel about someone’s illness, not the way the actual person does. I’ll let you come to your own conclusions about how you feel on that issue, but it’s like calling a new beer the “He’s a mean drunk” lager. Not the name you’d pick for yourself, surely. Maybe your friend, you know, that friend who wants to fight every man, woman, and child in the bar after drink number six, but never you.

So, what happens when you have an invisible illness? Does having it make your illness more severe? Does having it make your life physically more difficult? Do little invisible elves come during the night and hit you with tiny hammers? No, of course not. Well, not sure about that last one, but probably not, I haven’t checked my camera lately. The point is, no, it doesn’t directly influence your cancer, but it can certainly make life outside your home more stressful.

"You don't look sick"

Say you happen to be having a good day, which doesn’t happen often. You’ll probably decide to run out and get some of those errands off your list. You know – the ones that have been building up for so long that you’ve started to write sideways in the margin on your to-do list – yeah, those. You venture out and you’re looking good and feeling good, and you head into the grocery store, and what happens? You run into Margie from down the block. Margie says hello and wishes you well, but then she gets on Facebook and tells everyone that you looked great and didn’t look like you had cancer at all!

Rumors start to swirl and people wonder if you are exaggerating or just being a “drama queen,” or maybe… you’re not sick at all! Well, your “good day” just had a giant you-know-what taken on its head and that turns into stress. Stress makes everything worse and now you’re back at home, stressed out, feeling like garbage, all because you had the audacity to go outside while feeling well. That’s living with a so-called “invisible illness,” and it sucks.

People only see us when we feel well enough

We live in a society where people are judged on looks. It’s pretty much built into our culture from the ground up – I mean, beauty pageants are still a thing for God’s sake. This plays right into the evil hands of the whole “invisible illness” phenomenon and when you have something as difficult to pin down as blood cancer, it makes it orders of magnitude worse.

The ironic part of the whole situation is that we only go out when we feel up to it, which usually means it’s a good day. Why would we go out when we are puking our guts out, fighting off a fever, and in bone pain from chemo? We wouldn’t, that’s why. This means the only time people see us is when we are feeling well enough to participate in normal activities, which means we are probably going to look like we are doing OK at the very least, but it’s all an illusion. There’s no way to tell simply by staring at someone that all their energy is about drained and once they get home they are going to collapse into a chair and not get up again until bedtime. I mean, unless you are wearing a t-shirt that says... “I’m almost out of energy and I’m going to go home and…”  Etsy shop idea?

Cancer is seldom invisible

Invisible illness, nope – never. Cancer is seldom invisible, and blood cancer especially. It’s a battle every day that can last a lifetime with never an end in sight. We need to come up with a better term for it, like “variable illness,” or “intermittent illness,” or, “some days I’m good but other days I’m not…  err… illness.” We will workshop that last name, but the point is the whole “invisible” part of the moniker needs to change.

It never sat right with me and more and more I read about people who also feel like their illness is not only visible, but painfully so – an eyesore even, and to suggest that anyone, anywhere, might think your blood cancer doesn’t exist or “isn’t so bad” is just adding insult to injury. We may wish it was invisible some days, but you know what they say about wishes…  Talk soon.

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