I have fibromyalgia. If you're a regular reader, found me through #MentalMovement or know me personally, you may know this. If you're new and simply stumbled across my blog due to this post being published (first hi, welcome, take a seat. Coffee? Tea? OJ? Hug?) you can read my story HERE. If you're just another suffer of an invisible illness and hope to find clarity in the way of someone else understanding the words that frustrate you, I hope to do you justice. If you're someone who knows somebody with an invisible illness and want a better understanding of the right things to say, fair play to you for giving it the thought. We all too often throw around words, assuming that they're fly away comments and will be forgotten. But here's the thing, when you're stuck in bed or resting for a good portion of your current life, you have the time to over analyse every word that was said to you - because when most of your day is filled with silence, those words matter.When loved ones cease to amaze you with their thoughtless words, it grows to be a root of sadness inside of your heart. It's a sad truth. To you, your words may seem caring enough, but to us it can be extremely frustrating to repeatedly hear things that feel like a stab to the heart.
Here is my list of throwaway sentences that I've heard all too many times.
"You're looking better."
Guess what? Invisible illnesses are invisible, shock horror, right? When you say that to us, we feel unable to disagree with you. You're backing us into a corner and we have no other option than to go along with it - true or not. If we disagree and say "Actually I still feel like death." we're going to feel moany and like we're crying out for attention. Instead, why not ask "Are you feeling any better?"? Chances are, we aren't, but it gives us the freedom to answer with what we want to.
"Whats wrong?"
If we tell you that we're in pain, don't ask stupid questions like this. I mean, really? Widespread pain is simply that. Widespread pain. We can't pinpoint exactly whats wrong as it's all consuming. It's taking over our entire body and you have to understand that words cannot accurately describe the pain. Our body barely understands it and that is why it sometimes shuts down.
"This'll help you."
We've all seen the articles offering a miracle cure to our illnesses. No matter what you have, chronic or not, adverts and online forums are packed with things that will help you. They're "guaranteed" after all. No. It's horse crap. And over time, we learn to take everything we read/see with a pinch of salt. But when our loved ones come to us, adamant that their particular "miracle" will work, it's a harder pill to swallow. On one hand, it's incredibly sweet that you're looking into things that may help us. The thought is wonderful. But don't say things like a statement, and learn to not believe them yourself. If something seems plausible, don't state it as a fact to us, instead simply say "Do you think this might help you in anyway?" Let us decide, and don't make us feel bad if we're not as fast to jump on the hope train. We've been let down multiple times in the past and it's near impossible to think that there is a light down these dark tunnels. (There normally is, but it takes time. It's all dependant on the person and where they are on their journey.)
"Can I do anything to help?"
This is a kind question, of course it is. But we're going to say no. Unless we're really open with our needs and aren't mortified at having to constantly ask for help, we're going to decline because we don't want to be a nuisance. That's one of our greatest fears, after all. Isn't it everyone's? This isn't so much the question, but the wording. Try "What can I do to help?" instead. There's still a 75% chance we're going to say "Nothing, but thank you.", but it's an open ended question. It feels kinder. Sounds illogical, but it's true.
"I wish I could sleep that long."
I'm sorry, but seriously? This one grinds my gears. We're sleeping because our body literally gave up on us for an unreasonable amount of hours. We're constantly exhausted because we're in pain. And you're trying to make us feel lucky for being stuck in bed, most likely in the fetal position, wishing for just a second of normality? We all lead different paths in this life, and I understand that people are tired and sore after a day of hard graft at work. I tip my hat to you, it's respectable. But.. we as people with invisible illnesses do not choose to be unwell. We don't want to spend days on end - sometimes weeks - stuck in the house, our four walls feeling more and more like a prison.
A Notable Mention: Lastly, unless you're in a large amount of pain - I'm talking the kind that makes it hard for you to do anything that one would class as "easy" - please don't drone on and on about how sore you are after you merely slept funny. This is probably a taboo thing to say, but we hate it. We hate to hear you groan and moan about a little stiff arm or a headache caused by your choice to stay up until stupid o'clock in the morning when we can lead the most healthiest of lifestyles and still find it tremendously difficult to stand up without support. Whats more annoying? When you moan that you're in pain but say "nah" to doing things that could help. Do you realise how much we wish that we could have something that'd ease our pain? You're lucky. I'm sorry that you have to feel a smidge of pain, but you're lucky to be able to heat up a hot water bottle/heat pack, have a hot bath, a massage, or pop a simple aspirin and get relief. If you don't want to do any of those things, you aren't in proper pain. Talk to us, of course, we're your loved ones. But think about your words. Please.
- Anne x
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