Chronic Illness: A Guide for Clueless People

You know someone with chronic illness. You might not even realize it, because many chronic illnesses are invisible, but you do know someone who is chronically ill. Perhaps you, yourself, are a sufferer.

I am married to a man with chronic illness. I won’t go over his laundry list of problems, but I assure you the man faces a battle every morning when he gets out of bed.

I can also assure that a lot of people don’t “get” what he’s going through.

This guide is less about how to live with chronic illness as it is about how to live with and interact with someone else who has one — or several. Because if there’s one thing I’ve learned in the 17 years I’ve been married to a sick man, it’s that people can be downright rude and obnoxious about it.

Everyone Has the Answer

So, you eat kale everyday and you feel like a million bucks. Great! Your grandmother cured her own hair cancer with essential oils? Awesome! That doesn’t mean either of those will fix my husband’s problems.

People mean well and I generally don’t get miffed at those who offer medical advice. Just don’t push your “cure” on me and don’t judge the one my husband has chosen.

I’m a professional health writer, and a lot of people think that means I have an “M.D.” at the end of my name. I don’t. I know more about certain medical topics than the average person, but you don’t want me diagnosing you or cutting you open, right?

I appreciate that you want to help, but realize you are not a doctor, and that my husband is going to follow his doctor’s advice over yours.

More than one person has told us, “Just eat healthy.” No sh*t, Captain Obvious. But right now I can’t load my husband up with vegetables, beans, and legumes. So quit driving home the point. You don’t know what you’re talking about. A single corn kernel could land my husband in the hospital, OK?

We love you, but you’re clueless.

No, we Won’t Just Get Over it

Having a chronic illness often means not being able to engage in the same activities as a healthy person. You would be amazed how angry people get over this. If you’re not missing a limb or hooked up to tubes and IVs in a hospital bed, people think you’re either not that sick or faking it.

Being in the cold for more than a few minutes wreaks havoc on my husband’s body, and has the potential to cause him a week’s worth of pain. This fact has ruined plans on more than one occasion. Know what? That’s too damn bad.

I’m sorry if we can’t camp with you on a mountaintop in January, but that’s life. If that angers you, I really don’t give a damn.

If you think an illness doesn’t exist or isn’t that bad just because you can’t physically see it, that’s your problem, not ours. Go over there in the corner and be ignorant by yourself.

But don’t rescind the invitation.

Your chronically ill friend might not be able to join in all of your activities, but be polite and invite him anyway. If he can’t do something, he’ll let you know. Then it’s your turn to accept it and not act like an entitled little snowflake about it. But if you start excluding your friend, he’s going to start feeling very isolated and alone, and he needs your support.

Quit Pointing Out the Obvious

This is the phrase people say to my husband that makes me want to punch a wall:

“You have more health problems than anyone else I know!”

Thanks, that’s very helpful. We had no idea how bad things were until you pointed it out to us.

Ugh.

The funny thing is, nobody says that about, say, cancer. Nobody says, “Geez, you’ve had more chemo than anyone else on earth!”

It’s just rude. Don’t do it.

Quit Judging.

One of the most annoying things in the world is when someone judges a chronically ill person — especially when they an illness you can’t see.

People watch what my husband eats and then decide for themselves how sick he really is or isn’t.

“I saw him eat [fill in the blank] on Friday. There’s no way he’s that sick.”

Unless you have an M.D. at the end of your name, we don’t want to hear it. You have no idea what the doctor says my husband can and can’t eat. I’ll lovingly police what goes into his mouth, I don’t need your assistance.

We don’t need your judgement, either. Don’t come down on my husband for eating a muffin when you sit there and pound energy drinks all morning, OK, hypocrite?

Now, maybe this sounds like an angry tirade to you, and maybe it is, at least a little bit. But I’ve been dealing with this for many, many years. After repeatedly explaining things to people and overhearing their gossip, I got fed up.

I’ll end my blog post this way: Be encouraging, be non-judgmental, or be gone.