Greetings from a Tired Girl,
Over the past year I've gotten to know the spoonie community, and their struggles became my own. One of the biggest issues a person with an invisible illness faces is the persistent judgement from others. The reason awareness around invisible illnesses is so important is that attitudes towards illnesses we cannot see need to change. This is particularly true of chronic illnesses that do not present visible changes to a person's body, even though the physical changes are there for the person themselves.
To help with this, I've written a short guide on what not to say to someone with a chronic illness.
1. "You don't look sick"
This one, I hope, is obvious but it makes the list anyway as it is one of the most common things to be told as a person with an invisible illness. This is why we call them invisible illnesses. Telling someone they don't look sick diminishes their daily struggles, and it especially stings on a day where we managed to take a shower, put on a bit of makeup and go out because those are our good days. Chronic illnesses are all about a balance of good days and bad days, and only doing as much as you can. So if that day we managed to live a next-to-normal life again, don't belittle the struggles of our other days just because you caught us on a good one! You don't see the days where we can't get out of bed, with greasy, knotted hair and eating cereal from the box because we don't have the energy to cook anything with nutritional value attached to it. Even if you think this works as a compliment, it doesn't, so I think I speak on behalf of the entire community when I ask you to please stop using it.
2. "Have you tried...?"
This one can be tricky because most of the time people really do have good intentions. The problem with this one is that things that work for some people just really don't work for others and it can be really disheartening to learn that it doesn't work for you. Not only that, but often I just don't have the energy to try new things. Honestly if one more person tells me I should try yoga (including doctors) I'm going to ask them to stand on a yoga mat just so I can pull it out from under their feet. I know it is said with genuine care, but I cannot tell you how annoying it is to have often complete strangers tell me how to cure my chronic illness with the next big thing. If something worked for you (or your fourth cousin's, husband's, mother's pet frog) that's awesome and I am really happy for you! But please stop telling me I ought to try the same thing, unless I specifically ask for suggestions. Additionally, if you are not someone who is chronically ill, I'd ask you to consider whether you know enough about the condition you are suggesting treatment for before you comment, as your kindness can come across as patronising, even though that was not your intention.
3. "You look so much better than when I last saw you!"
Thanks, you look terrible compared to when I last saw you! Yeah, doesn't feel nice, does it? It's not that we think this is rude, we know it's meant as a compliment. But similar to telling us we don't look sick, this one suggests that we were sick and now we're back to being totally healthy. For me, it also set a standard of how I must look and feel every time I see this person. There's a lot of pressure in knowing I have to make a certain level of effort when I see them again, which often leaves me feeling exhausted just at the thought of getting ready. Without meaning to, you alienate your friends with chronic illnesses when you say things like this, because we feel like we can't tell you when we're having a flare up, or just don't feel like getting dressed up some days. I know I am guilty of avoiding making plans with people because I'm afraid that on the day I won't feel up to getting ready, and comments like this just add to those fears.
4. "Have you recovered now?"
I can forgive you if you asked me this when I was first unwell because it's a natural thing to ask a friend if they're feeling better after any illness. However, if a year in you are still asking me if I've recovered every time I see you, stop. The thing about chronic illnesses are, they are very difficult to fully recover from, and there is a very large percentage of people that never manage it. That doesn't mean that I won't be one of the lucky ones that does fully recover, but if you ask me every time you see me, it's a reminder that I'm not there yet. It also tends to come across not as concern but as boredom. When you ask a person with a chronic illness if they have recovered yet, the use of the word "yet" gets stuck in our ears and all we hear is that you're bored of us being sick. Let me tell you, if you think you're bored, you can't possibly imagine how boring it is for us! I promise, if we recover, you will know about it because it will be all we want to talk about as soon as we see you.
5. "At least it's not...!"
If someone had breast cancer, would you say "at least it's not a brain tumour"? If someone had anxiety, would you say "at least it's not depression"? If someone had Alzheimer's disease, would you say "at least it's not Parkinson's"? Saying "at least it's not" followed by a disease you deem to be worse is not a comfort. It doesn't make us feel better to know it isn't something worse. Yes, of course we are glad we don't have cancer, but why should not having cancer be a reason to celebrate having a chronic illness? Why should we be grateful when an able-bodied person tells us "at least it's not something worse" after being diagnosed with a life-altering illness? It is not anyone's place to compare the struggles of the sick. Everyone is fighting their own battles, whether they be health-related or otherwise, so be kind and don't belittle other people's misfortune with the words "at least it's not".
6. "Yeah, I often feel tired too."
I'm going to explain this once only. Fatigue and tiredness? Not the same thing. Not even close to the same thing. When the end of the working day approaches and you feel tired, you drink a coffee, cook some dinner, watch a TV show and go to bed. When I wake up in the morning and feel fatigued before the day has even begun, I might attempt to get dressed and then end up going back to bed because I used all my energy for the morning getting out of my pyjamas. When you go on a night out and roll into bed at 4am you feel tired the next morning because you didn't have as much sleep as you usually do and were necking tequila shots for three consecutive hours the night before. When I get out of the shower and dry my hair, I feel like I might be the one with a hangover even though I haven't touched a drop of alcohol. Fatigue is not the same as tiredness. When you're tired, you get a good night's rest and feel better in the morning. Fatigue is felt on the vast majority of days in people with chronic illnesses, and even if we slept for an entire week, it doesn't go away.
7. "I'd love to have so much time off school/work!"
OMG so would I!! I would absolutely love to not be able to go into work, or school and see my friends and colleagues and not be able to form lasting relationships because I'm known as the flakey friend and can't make commitments to far in advance in case I can't get out of bed on the day! Sounds completely ideal.
Sure, I might like having so much time off if I was able to walk to the fridge every five minutes for snacks and if I didn't have a thumping headache that meant I couldn't focus on the screen long enough to watch even one episode of my favourite TV show. Unfortunately, that's not the case. Would you tell someone with the flu you'd like to switch places with them? (Well, maybe you would if you really hated your job, but it would have to properly suck to do so). No? Then don't say it to a spoonie either.
8. "How come you can do...?"
Honestly, your guess is as good as mine! Some days I can walk miles, go to a dance class, do some aerobics, write a blog post and go for dinner with a friend. Other days I'll brush my hair and need to follow it with an hour nap. I don't know why I can do some things on some days and nothing on other days. The biggest thing I've learnt about chronic illnesses is that they are completely random. We wake up every day not knowing what we'll be faced with that day, a constant roll of the dice. So please, don't ask me why I can do something, just be happy that I am choosing to spend my good days with you doing something that reminds me that the sum total of my life is not my illness!
If you have anything to add to my list, please leave a comment and let's continue to spread this awareness so people can better understand us!
Stay safe,
Charlotte. X
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