Since I’ve been sick, since I’ve been chronically ill, and then later, learning it was expected to be a terminal condition, I’ve had a lot of people say a lot of things to me. Some things, I don’t mind so much. They are meant well, and they are kind things from kind people. But there are some things that just get on my nerves. And I’m not the only one. It’s not just terminally ill people, but really any chronically ill person who is likely to feel this way.

If you’re friends with someone who is terminally or chronically ill, there are certain things you should not say to them. Depending on sense of humor of the person who is ill, there can be jokes and sarcasm about the illness, if you know the person well enough to know they will like the jokes. Those things are all fine, and in fact, usually welcomed, because it helps normalize the illness. Which is really what I think most of us want–to ‘normalize’ our lives, so that our illness isn’t always the main topic of discussion or worse yet, a topic to be avoided and ignored and danced around. I don’t mind jokes about death and dying, just because I have terminal illness that might kill me any day. In fact, I tend to make some of the funniest jokes myself.

The other day, I was laughing so hard I couldn’t breathe (which takes on a whole new meaning when you’re on oxygen therapy, let me tell you) at something my son said and I told him to stop being a dork and making me laughing, ’cause he was killing me, and he’s feel really guilty if I literally died laughing. I’ve made jokes about Lynn cleaning up my computer for me if I were to drop dead suddenly. Sometimes, when I’m in a pissy mood, I’ll make morbid jokes that aren’t at all funny. Fortunately, my family won’t let me get away with it and instead of looking at me with pity and worry in their eyes, they call me on it and tell me to snap out of it. Good for them!

And that’s the thing: I want special treatment for my illness to accommodate the things I can no longer do, but I do NOT want special treatment for my illness based on my personality or actions. I am still a human being and I should be held to the same standards of life, love, kindness, fairness, courteousness, etc., as any human being is. If I’m rude, don’t let it go just because I’m in a wheelchair. If a guy in a wheelchair rides by you and purposefully scratches his chair arm down the side of your car, he’s still responsible for payhing for the damage, whether he’s handicapped/disabled or not. If someone calls you a nasty name, you can call them out, even if they have cancer or a chronic illness.

Now, I am exempting those who have disorders that mess with their brains–that’s a totally different thing. I’m talking about people who are sick, even dying. They don’t get a pass for bieng assholes or jerks. And they really don’t WANT that, for the most part. I’ve talked to a lot of people who are living with terminal illnesses since I’ve been sick and the one theme that seems to be running through the whole community of sick people is that we all wish things were more NORMAL in our lives again. The number one thing that we lament the loss of is our old way of life, but the number two thing that we seem to lament the loss of is the way people treat us.

I think that’s why I like Facebook so much since I’ve been sick. On Facebook, I’m as normal as anyone is normal (and on Facebook, that’s saying something). On Facebook, people don’t see my nasal cannula; my fat body; my swollen face, hands, feet and legs; the fact my right leg is twice the size of my left leg due to damage to the main blood vessels feeding that leg so it swells horribly; or any of the other things I have to go through that have changed how I appear to others. On Facebook, no one sits up all night with me when I can’t sleep or holds my hand when I’m in horrible pain, hand holds my hair back while I hang over the side of the bed, puking my guts out repeatedly. These are all things my family sees on a regular basis. I suppose it can’t help but change how you view a person. I don’t blame them or anyone else for treating me differently. It’s just, on Facebook, I’m not fragile.

So it’s a refuge for me, a place to hide and be ‘normal’ as n normal gets, to have interactions that are more genuine and honest. It’s a place where I get to feel, for a short time, like the me I used to be. But every once in a while, people on Facebook even say things that just aren’t quite right to say to someone who is dealing with the things I’m dealing with.

Sorry for the long windup, but let’s get down to the brass tacks here: What Not to Say to Someone Who Is Dying (Chronically Ill)

Don’t apologize if you’ve said these things to someone, even me–I’m neither expecting that nor wanting it. I’m simply putting this out there as general guidelines, and every sick person is different, so keep that in mind. These are general things MOST of the people I’ve talked to in forums who are dealing with the same chronic illnesses and such as I’m dealing with have said at one time or another. The main point here is, Don’t change how you treat someone JUST because they are sick.

1. I know just how you feel / I know how you feel / I know what you mean (give an example of your own story)

Here’s the thing: Unless you too are dying, you do NOT know how I feel. Even if you ARE dying, you still don’t know how I feel. You might can guess and empathize with me, but you can’t possibly know how I feel. So don’t tell me that you do. Because when you say that, I want to scream at you: No, you don’t! You don’t know how I feel–you can’t possibly know how I feel–no one can possibly know how I feel! It’s a gut reaction. It’s an emotional pain reaction. But the truth is, no one can ever truly know how another feels, so there’s really no reason to say so. It’s okay to say, “I’m sorry.” or even, “I can’t possibly understand what you’re going through, but I empathize with your pain.”

2. My so-and-so used such-and-such treatment/medicine/herbal remedy/online elixir/snake oil cure/MLM marketing product/etc., and it worked wonders for him/her! You should try it!

When someone is living with a terminal illness, chances are their medications are highly regulated. I know mine are. I’m on a lot of stuff that can be quite dangerous is I go adding herbs I don’t know what they are to the mix. While I appreciate the intent to help, taking something I don’t know what it is could literally kill me or cause major interactions with my medication. If I take these things to most of my doctors, they look at me like I grew a third eyeball in the middle of my nose, so it’s easier to just let it go and stick with what I know works. Now, that doesn’t mean I don’t necessarily want to hear about new and cutting edge treatments and such I might not have known about, but with as many friends as I have on Facebook and with all the research I do, it’s unlikely I won’t have heard about it a bajillion times already. Please know, I truly, deeply appreciate all the concern and the caring and the intent behind these suggestions, but I simply can’t risk my health on these things. Most chronically ill people agree these suggestions get old after a while.

3. So-and-so had such-and-such disease (usually the same as or similar to your own), and he/she lived for years and years after diagnosis!

Yeah. Every person is different and every disease progression is different, so hearing that someone else lived a long time and a good life after diagnosis is not only not helpful, but it can sometimes be defeating when your diagnosis is different and you know you won’t possibly be able to have what that person had. Hearing that others lived a long time after a diagnosis might seem on the surface to be an encouraging thing, but people who live with terminal illnesses have to constantly fight against the ‘false hope syndrome’. Facing the reality of our situation without delving into the morbidity of it is crucial for remaining healthy mentally and emotionally in the time we have left. If you want to give us hope, then talk to us about all the things we can still do with the time we have left–however short or long it is–and talk to us about how our lives make an impact on those people and things around us. Help us leave a mark in this world that means something, so that whatever time we have is quality time.

4. Nothing (or nothing about the illness).

You know, it’s not uncommon when someone is sick for friends to turn away from their friend who is ill. It’s hard when your friend can’t do all the things they used to be able to do, the things that brought the two of you together in the first place. But if you think it’s hard on you to not be able to do things with your friend any more, think how much more difficult it is for your friend who can’t DO those things. And while you have other friends who can still do those things with you and you can turn to them, your sick friend has no one else they can DO those things with because they can’t DO those things. If all the friends who can’t do things with the sick person any more turn away, where does that leave the chronically ill or terminally ill person? Friendless and alone while they are facing their illness.

Almost as bad is to pretend entirely like nothing has happened. Sure, it seems like a good idea on the surface of it, since all a sick person wants to do is be ‘normal’ for them again, but the truth is, facing an illness changes a person. It changes their day to day reality. To ignore that part of them is to ignore a huge part of who they are. Not to mention, sometimes, they need to talk about it. They need a friend to vent to. They need someone safe to blow off steam or cry on their shoulder once in a while. Don’t be afraid to talk about them being sick. Don’t be afraid to ask them questions. If you know they have a doctor’s appointment, ask how it went or if they got any news. Ask if they need a ride or if you can do something to help.

5. “I’m’ just fine. Everything’s great!” “You deal with so much, I didn’t want to burden you…” “It’s nothing compared to what you’re going through….”

Don’t lie to your sick friend and act like you have no problems, because you’re afraid that your petty day to day problems can’t possibly compare to their illness. If you used to dump on your friend, it’s okay to dump on them now. That’s the dynamic of your relationship with you. You share things. And then if you do dump, don’t qualify it with things like, “It’s nothing compared to what you go through every day, but…” because all that does is make the sick person feel normal for a moment while you’re dumping, but then you jolt them right back into their reality of being sick with the qualifier. Be yourself. Share your day with them. And if they dump on you and say, “I have cancer and you’re talking about bickering with some guy at your office… seriously, how petty can you be?” Answer them honestly, “Well, if you were working at the office, and had cancer, you’d be complaining about this guy too!” or something… joke, tease, treat the disease like you would any other obstacle in that person’s life.

6. “Have you been saved?” “Do you know Jesus?” “Have you given your heart to (insert god of choice here)”.

Religion is so very personal. Let it be between that person and their god, or lack thereof, and unless THEY bring up religion, avoid it.

 

I could go on, but I’m not going to right now. I’m sure I”ll think of more things in the future. I think the main thing here that I’m trying to say is: The person who is sick is still the same person as before. It’s a lonely place to be, and people tend to shy away from those who are sick. It gets old when conversations change from dress and shoe shopping to how many IVs you got that week and how much your medication costs. I understand that it’s not FUN to be around someone who is sick.

It’s not much damned fun being sick, either.

But the difference those few moments of normalcy that a friend can bring into a chronically ill or terminally ill person’s life are invaluable, crucial, vital to survival, even. Sick people NEED friends. They NEED people to love and care about them. They NEED to know that someone is there.

So that said, it’s important to know that even if you say and do everything wrong, it’s still more important that you are THERE than anything else. So don’t sweat worrying about the righ thing to say or do. Just go be with your sick friend. Just call them and let them hear your voice, even if your voice says every single wrong thing there is to say. Because, you see, in the end moments of that person’s life here on earth, they aren’t going to remember all the wrong things you said or did. They are going to remember who was there with them. They won’t remember what you wore or how you looked in that moment or how you voice sounded or the words you said. They will remember that you were there. And they might recall those who weren’t there. And what’s going to make all the difference to them–and what makes all the difference to me right now–are those who are there, those who try to say the right things, those who care enough to reply to my posts, to respond to me like I’m not a sick person and those who respond to me like I am.

Your presence will mean more than anything else… just BE there. That’s what’s going to matter most.

Love each other.

Love and stuff,

Michy