Note: If you have a loved one that is severely depressed and refusing any sort of treatment or is suicidal please contact their doctor or call 911. I am not a doctor. I’ve just been ill for a very long time.
What Chronically Ill People Really Want You To Know
“You need to get out of the house.”
“You need to eat better.”
“You owe it to your family to get well.”
“Aren’t you better yet?”
“It’s just stress.”
“Do this, do that, do whatever, etc”
“You have to work up to it. Your body will adjust.” (no it won’t, sorry)
“Have you tried ______?”
“I had that once, and I got over it.”
“Meditate. Yoga. Hypnosis. Turmeric.”
“You must be sinning, that’s why you’re ill.”
“If you had a better attitude you wouldn’t feel so bad.”
These things DO NOT HELP. People with chronic illness feel like a burden as it is, all of the above makes it even worse. Consider your words before speaking. Consider how you would feel if you were ill and someone said these things to you.
Imagine not being able to do anything, go anywhere, miss out on family time or not being able to work. Now imagine that it’s going to be this way for the rest of your life. Imagine not being able to eat whatever you want. Imagine spending 6 hours a day on the toilet (not hyperbole.) Imagine not ever feeling rested, imagine taking a shower and then having to lie down for 2-3 hours afterwards. Imagine constantly feeling misunderstood. Imagine going to doctor after doctor and having test after test and feeling like you really must be crazy.
We don’t want to be pitied, we want compassion. We don’t want you to try to relate. We don’t want to hear you say that you understand when unless you have a chronic illness, your understanding is just a perception of how you see us with the illness. We need your support and love. We don’t need you to tell us what to do. No one likes solicitors! Instead, ask how you can help or if you can help. Please don’t say “so and so did this and they’re better,” or “I googled your symptoms and have you considered ____ or tried ____?” Rather you should say (if anything), “is there something can I help you with?” (And personally, I appreciate people saying they are praying for me. )
Don’t make us feel guilty, we already do. Saying we “owe it” to get well invalidates us. It sends a message that we’re aren’t acceptable ill. It also implies that we have control over the situation when we don’t. Hey, if I had a magic wand I’d be well in an instant. No one LIKES being ill.
We don’t need lectures or you saying “I understand,” when you actually really don’t. You may think you understand from your perception of how we behave in regards to our illness, but you don’t understand. And it’s okay. You don’t have to understand to support and love someone.
If we say we need a nap, we need a nap. If we say we’re in pain, we’re in pain. We don’t want you to fix it, we just want you to believe us and to know what to expect from us. Being ill is very draining on a person.
We’re not trying to make your life difficult. Believe me, it’s the last thing we want to do. We live with ourselves so we know what a pain we are! We know it’s rough caring for someone who is ill, but we love you and thank you for your support. Especially on the really bad days where we just want to hide or cry or scream, we thank you for allowing us to feel all the feelings. We thank you for allowing us to just be sick and for making us feel like we are worthwhile even being ill. That’s all we truly want: to be seen as worthwhile.