This is a list anybody with a chronic illness, invisible or otherwise, hates to hear. I used a post I had seen as the basis for this, but, it is what is said. While some of it may be said with good intentions, it can really hurt. I do my best to be forgiving because I have been one of those people, but sometimes it's hard. I have heard every one of these and while some of them really aren't that bad, some open an already deep wound even farther.
But you don't look sick.
This has been said in three different forms to me.
1) In confusion
2) To possibly make me feel better with a compliment
3) An accusation
The first two, for me, are fine. I can try to clear up the confusion and I can be understanding towards the intended compliment and say a thank you. But do NOT accuse me of making something out nothing. I don't have this because I want it. Just because I don't look it, doesn't mean that I'm not suffering in some form or another. Do I have to look like I'm dying before I'm believed?
Everybody gets tired.
Yes, everybody does get tired. But do you know what it's like barely being able to get out of bed or not getting out at all more often than not? Do you know how hard it is to be to tired to be able to the things you used to do? Do you know what chronic or severe fatigue is?
You're just having a bad day.
Really? Having a debilitating chronic illness is having a bad day? I have to live with this forever not just a day.
It must be nice not having to work.
This is one I hate the most. I heard this from people I worked with for fifteen years. I was not lazy at work. I rarely took off if I wasn't feeling well. If I did, I was really sick. When I had surgeries, I would talk the doctor into letting me return to work early. These people should know better. Yeah, it's great worrying about bills and food. It's great having had to give up the life I once had. All just so I could get out of working. Yeah, it's nice. It's so nice that I sold my horses that I loved dearly. It's nice to feel completely useless.
I wish I had time to take a nap.
I gotta say, naps are great when fatigue sets in. My naps are borderline narcoleptic. They are gonna happen whether I have the time or not. Did I mention the chronic fatigue before? Oh, I did, but you chose to ignore that part.
If you'd get out more...
If I get out more, that's going to make me what? Magically cured? I get out as much as this body lets me. Yeah, sometimes I force it, but I pay for it dearly. I wish I could get out more, the bed or the couch aren't exactly my favorite hangouts. I get told this by well meaning people. Some are struggling to understand, others just don't bother to.
You're just getting older.
My husband used to say this to me before I was diagnosed. I would get so mad because I knew I was to young to be feeling like this. Now he knows better.
If you'd get more exercise...
This one make me frustrated, guilty and angry. And again, it comes from well meaning people. They seem to think exercise is a cure all. And no matter how I explain, they refuse to listen because they know somebody with an illness and it did wonders for them. Awesome for those people. While I agree I need more exercise, desperately, Fighting the severe fatigue is a battle. I used to be extremely active. I lived with ants in my pants. Now, the guilt and frustration of not having the energy to even go for a walk is tremendous. And then to have somebody say that makes me want to crawl in a hole. On my good days, I make the most of it. Some of the not so bad days, I push it.
It can't be that bad.
I will trade bodies with you for one day. Then try telling me that. Do you know what it's like not being able to hold a fork because your hands hurt so bad? Or not being able to hug somebody because your skin is sensitive? Not being able to go out with your friends because you are to exhausted just from grocery shopping? Do you know what it's like just struggling to get out of bed and then pray you have a good day? Do you know how hard it is to sleep when every part of your body hurts and you can't take anything to help? Do you know how hard is to be left behind because your body can't keep up? Granted, everyday isn't that bad, but that's not what you mean.
It's all in your head.
Yeah, that's why I see a specialist. That's why I take pills every day to stay alive. That's why I end up in the ER for related issues. It's all in my head.
You're just depressed.
Yup, I get depressed because of my illness. But my illness is not because I'm depressed.
There are people worse off than you.
Yes, I know this. I feel absolutely horrible for those that are suffering more than I am. But don't expect that comment to make me suddenly better or okay with having this illness. My pain is my own. My problems from this illness are my own. I have to struggle every day just to stay afloat. When you break a leg, don't worry about the pain or setbacks, because there are people worse off than you.
You'll just have to tough it out.
Yup, for the rest of my life. Tough it out? Is this a blizzard or something?
You just need a more positive attitude.
I don't even know how to respond to this one. I thought I was rather positive. Other than the bouts of depression that can't be helped, my attitude hasn't really changed. I'm naturally happy. I think I'm doing pretty damn good considering this chronic illness sucks donkey butt. Stick that in your pipe and smoke it.
It'll pass.
What part of chronic did you not understand? Is it another blizzard?
Ha ha. I was getting pretty upset writing this. But now I feel better after getting all that sarcasm out. It's a shame most people will still never "get it" until it happens to them. I have patience with people that honestly try to understand and be forgiving of them when they stick their foot in their mouth. I've said it before, I have been one of those people. I ashamed of myself for it, but it helps for me to remember that so I don't get so upset. But there is always those people out there that know it all and you will never change their thought process.
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