Disclaimer: I tried my best to remain calm while writing this, but it might have gotten a little rant-y towards the end. Oops. Also, if anyone I know in real life is reading this and you’ve said one of these phrases to me, I promise I don’t hate you. Just take note and try to not do it again. Thank you to everyone who supports me in this journey.
1. “I wish I could sit around and watch Netflix all day!”
Variations of this phase may sound like, “it must be nice to not have to get up for work/school every morning” and “I wish I had time to take naps every day!” I know that anyone who says these things is probably just trying to be cute and lighthearted or relate to me in some strange way, but it isn’t cute at all. It’s demeaning and it makes you look like an idiot.
Would you ever go up to a bone-thin, starving child in India and say “Wow, it must be so nice that you don’t have to worry about your weight like I do!” No you wouldn’t say that. Would you go up to a woman who is in the middle of chemotherapy and start a conversation by saying “It must be so convenient not have any hair! I wish I had cancer so that I wouldn’t have to spend half an hour fighting with this bird’s nest every morning!”
Here’s a news flash: sitting around all day isn’t fun when it’s the only thing you are able to do. Taking a nap is only nice when it’s a luxury, not a necessity. Sick people don’t want to sit around and watch TV all day. We want to go to school, and see our friends, and have a job, and feel productive. We want to be able to walk down the street and back without landing in the E.R.
2. “But you look so healthy!” or “You look better today!”
I know this is supposed to genuinely be a compliment, but it still makes the ears of a sick person bleed. The awkward part of having an invisible illness is that you usually LOOK fine. Even if it’s well intended, when you say “But you look so great!” what we hear is “Your outer appearance doesn’t match my definition of what illness looks like, so you are probably just over exaggerating your problems.”
Obviously, we don’t want to focus on our physical struggles 100% of the time, but hearing about how great we look on the outside when we feel so horrible on the inside…it makes us feel like you are looking past us and ignoring our pain.
3. “If you’re so sick, why aren’t you in the hospital?”
This one actually makes me laugh out loud when I hear it. If you’re a Spoonie with a compromised immune system like I am, the hospital is the LAST PLACE ON EARTH you want to be! I don’t expect healthy people to understand this, because when they go to the E.R. for a broken bone, they leave the hospital no worse for wear. But, when you’re body is hypersensitive to everything, the hospital becomes more of a minefield than a safe haven.
Just imagine this: you go to the E.R. for a hellish migraine. The only thing they can offer you is fluids and pain meds, which is all fine and dandy, except you’re unable to tolerate all the medications they would offer you. You are also allergic to the adhesive they wrap around your arm after they insert the IV, so you’re breaking out in a rash. You are also allergic to the nurse’s flowery perfume and now you can’t breathe. In the waiting room you sat next to a guy with the flu and a lady with a sinus infection…you’ll be lucky to escape the E.R. without a flu and a sinus infection in tow.
Long story short, unless you have a problem they can actually help you with (like oxygen, pain meds, or emergency surgery) then the hospital is the last place a Spoonie wants to be. Not to mention you’ll walk away with a 700 dollar bill to pay, which you happily add to your medical-bill-pile when you get home.
4. “At least it’s not (fill in the blank with a random disease that they perceive to be worse than what you’ve got).”
Once you spend a bit of time in the Spoonie community, you will come to learn that that nobody wins when you play the “comparison game.” Every chronic illness sucks and unless you live with a debilitating health condition, don’t chime in about how “it could be a lot worse.” Even if you do have a debilitation health condition, it’s still better to not say anything like that.
The truth is, even if you think someone’s illness isn’t that big of a deal it’s a big deal to them. And that’s what matters. What might seem like a little divot in the road to one person may feel like a moon-sized crater to the next person.
My favorite one is “at least it isn’t cancer.” Yes, cancer is horrible and too many people die from it. I wouldn’t wish cancer on my worst enemy. But you know what else I wouldn’t wish on my worse enemy? Lyme disease or any other invisible illness that is laughed at by government organizations and met with skepticism by too many doctors. At least when you have cancer, people believe you. They never say you’re faking it, they don’t say you’re crazy, and your insurance might actually cover some of the treatment for it.
*It’s estimated that suicide is the #1 killer of people with Lyme disease*
Yes, if you have a scary, misunderstood disease like Lyme, you are more likely to die by your own hand than you are to die from the disease itself.
Suffering mental and physical anguish in silence, being mocked by doctors, being disbelieved by your peers, fighting the system ever step of the way just to get treatment, and going bankrupt from medical debt, these are all the joys that Lyme disease brings you. Long story short, if you haven’t walked a few miles in someone’s shoes, don’t tell them about how it could be worse. Either validate their feelings or don’t say anything at all.
5. “When are you going to get better?”
I don’t know the answer to this question, so please move along. Chronic illnesses tend to last a long time because they’re…you know…chronic.
If I knew when I was going to get better then I’d also purchase a Powerball ticket and buy up a bunch of stock, because that would mean I can see the future. And I would definitely use my psychic skills to my advantage if I had any.
Also, real-talk: if you’re talking with a chronically ill person about their future, they’re probably already really discouraged about all the opportunities they are likely going to miss out on due to their illness. They want them-self to get better even more than you want them to get better. Questions like “why isn’t the treatment working?” and “you’re still sick?” are sure to get a blubbering, ugly-cry-face in response, so beware!
Again, thank you for reading. And until next time, be kind to those around you and don’t ask stupid questions! 😉
Em the Silver Spoonie