Chronic illness is an ever changing beast that we have to learn to work with. And we aren't handed a toolbox with which to fight it. My life with chronic illness has evolved a lot over the last year since I posted the first half of this blog post. I've grown a lot as a person and actually learned to make friends because of my chronic illness. Once again, these are all written from personal experience, and you may feel free to disagree with anything that you so choose. Please leave your thoughts in the comments, and I hope that you all have a wonderful day filled with many spoons if you need them (If you're confused, click the link)!
Don't Say: "You look great."
I understand that this comes from a place of kindness, and that you, when you are saying this, see it as a compliment, but it can come off as invalidating of someone's illness. Often, this one will sound like "You don't look sick." Especially when it comes to invisible illnesses, one may often look completely healthy while suffering greatly on the inside. Yes, I put on makeup and did my hair today, but that doesn't mean that I am not in pain. No I may not look sick. But, yes, I feel sick, and your words are not helping.
Don't Say: "Are you okay?"
The concept of "okayness" is a weird one because it is relative and completely undefined for the most part. On a day where most people might be miserable, a chronic illness warrior may say that they are "okay". One can still be "okay" while being sick. Additionally, this question puts pressure on the person to say yes because it is often asked without the expectation of the answer, just like the question, "how are you?"
Do Say: How are you feeling?
This one goes for a bunch of the "don't says" because it is generally just better to ask a question about how someone is feeling as opposed to assuming literally anything. It allows the person to give an honest answer about how they are actually doing. It doesn't assume health or sickness. The one catch with "how are you feeling," is this: you have to actually be expecting and wanting a real answer.
Don't Say: "You're trying the best you can? So are the rest of us."
This one is just mean, in my opinion. Even if it is trying to make the person suffering feel less alone, it is completely invalidating of the fact that many people who struggle with chronic illness have a much harder time, and additionally, it is just never helpful to compare two peoples' pain because pain resists the simplicity of language and we can never truly live inside another person's brain, so we can never truly know someone else's pain.
Do Say: You're not alone. I'll be here for you no matter what.
One of the hardest parts of chronic illness is feeling alone, so this reminds the person who is suffering that someone is there for them. Additionally, many people with chronic illness, including myself, often feel like a burden upon their friends and family, so reminding them that they have someone who loves them unconditionally can help a lot.
Don't Say: "Oh do they know what that is?"
This one is a tad bit insensitive, and in my opinion should be common sense, but people have said it to me, so I felt compelled to include it. Yes, I am also wondering why I am feeling the way that I am feeling, however, you asking is not doing anything to help.
Do Say: "How'd your appointment/test go?"
This doesn't assume anything, and it allows the person to talk about what is probably on their mind anyways. Often, people with chronic illness feel that they are boring or annoying their friends by talking about their illness with some regularity, so asking them about their appointment gives them an opportunity to feel comfortable talking about it.
