Saying Nothing Is A Forgotten Art

More people need to learn the art of saying nothing, in my opinion.

I get that people want to be nice. Supportive. They want to say something, anything, to make a situation better.

This post is just some food for thought and how I feel about my particular disease. I’m not trying to speak for anyone else with MS or anyone with a different disease because we’re all entitled to feel how we feel about our own existence. I just want to put my own perspective out there and it might be different from others.

Personally, I wish more people would work on saying nothing.

Here’s the thing when someone you know or care about is diagnosed with an illness or experiences disability:

Nothing you say is going to make it all better. Sometimes, saying nothing is all a situation needs. And I rarely, rarely, rarely invite anyone (except my husband and two closest friends) for advice, direction, or an opinion on me or my life, so the majority of the time when people say stuff to me regarding my health or disabilities, it’s completely unsolicited and totally unnecessary.

Let’s talk about some of the dumbass things people have said to me in relation to MS and now being disabled:

“Well, at least it’s not a brain tumour, right?”

Ummmm….is there a hierarchy of disease that I’m unaware of? So if it’s a brain tumour instead of a progressive disabling neurological auto-immune disease, then I’m allowed to be upset about it? What are we supposed to say to someone who has a brain tumour to cheer them up, using this formula? Don’t tell someone that they should be grateful that it’s not ‘worse.’ It doesn’t help. We’re aware it could always be worse. But it could also be a hell of a lot better, as in, not having a disease of any kind.

“Well, at least it’s not terminal!”

Also not helpful. I can’t speak for anyone else, but I’ve certainly spent a few moments wishing I did have something terminal. An endpoint, if you will. Other diseases can kill you in only a few years but something like MS can ruin your life for decades. Sometimes, knowing that I could spend another 40 or even 50 years getting more disabled or even needing long-term care at some point but at least I’ll live for a really long time is not a comfort.

“My aunt had MS. She’s in a wheelchair now. In a home.”

Listen…I get people are trying to connect and empathize. But unless your aunt with MS just completed her fourth marathon, I don’t want to hear about her. Just like if a friend tells you they have cancer, bringing up your cousin who had the same cancer and is now dead is not reassuring in the slightest. If you bring up someone you know with the same illness, you should know that we’re going to ask how they are. If they aren’t doing magnificently, saying nothing about them in the first place is a safe bet. Otherwise it’s going to get awkward.

“Focus on what you can do, instead of what you can’t.”

Thanks, Tony Robbinz. I can slap stupid people, but that interferes with my new mission of cultivating happy zen. Some days, what I can do includes going from bed to the couch and staring at a television screen, incapable of much movement or meaningful thought. The list of things I used to do but now can’t is fairly long, so sometimes I get frustrated about all the things I can’t do anymore, at least for the time being.

“Think positive.” “It’ll be okay.” “It’ll get better.” “You’ll learn to adjust.” “It’s not that bad, I know lots of people with MS.”

Of course I’ll learn how to adjust. Mainly because I don’t have any damn choice in the matter. As for telling someone it’ll be ok or it’ll get better, ok is subjective and not even my neurologist can tell me if it’s going to get better.

Along with everyone else with a health issue, I’m allowed to grieve the loss of physical abilities and my old life and the loss of a future that I thought would look one way, but is going to look very different. I’m allowed all my grief and all my feelings, and a pep talk isn’t what I need. Grief isn’t even a linear process. I can feel perfectly fine emotionally for days or even weeks on end, and then for no apparent reason I’m just sad that I can’t dance anymore at the level I used to. Or that I can’t sprint anymore. Or do challenging hikes like I used to, to get to where the views are really spectacular. So then I’m really sad for awhile, and I work through my stuff, and then I’m okay again. I’m allowed to not be okay sometimes.

I’ll probably always have moments of grief now and then, because that’s what happens when you have to adjust to a new normal.

My feelings are valid and don’t need fixing or managing by anyone but me.

As for, “It’s not that bad”…most people haven’t had the ‘honour’ of caring for patients in end-stage MS. I have. Part of my Advanced Care Paramedic job used to be picking up MS patients from their long-term care facilities and driving them to the hospital first thing Monday Morning. They were having surgery to sever their tendons so they could be ‘untied’ from the severe contracture and spasticity that had them locked into tight, emaciated, atrophied balls. These patients were bedridden so they didn’t need their tendons intact anymore, anyway. So please…unless you’ve seen someone in the end-stages of a disease, please try saying nothing about that which you don’t know about. Only one of those patients had any ability left to communicate whatsoever and I doubt very much he would have said, ‘it’s not that bad.’

I want people to understand that yes, I know you mean well. But I also want people to understand that by trying to give a pep talk, or a cliche, or something they’re hoping will uplift me or make me feel all better…

You’ve made my disease and disability about YOU and YOUR feelings, and how uncomfortable my situation makes YOU.

It’s not about you. When people give pep talks or cliched little bon-mots or try to assure me ‘it’s not so bad,’ I don’t find it kind or soothing.

It’s patronizing and condescending.

It implies that my feelings aren’t valid. That I’m being silly. That my experience is ‘no big deal’ or implying that I should get over it.

It is a big deal. To ME. And that’s all anyone needs to know. You don’t get to tell anyone else how they should be thinking, feeling, or coping. Ever. About anything. That’s a big life lesson I’ve learned in 40 years.

“You don’t look sick.”

Well you don’t look like an ass, but here we are. (Obviously sarcasm isn’t produced in the brain stem, my sarcasm is about the only thing left about me that’s quick.)

Here’s how it works when someone has a chronic illness: When we’re having a bad day, you probably won’t see us. We stay home. Maybe we stay in bed. Or we make our way to the couch and stay there. We might take meds. Most of all, we try to cope. It’s not often we decide to head out in public to show everyone what a hard time we’re having. Now when people say this to me, (because they haven’t seen me moving haha) I just say, “Gosh, I’m so sorry it’s not glaringly obvious to make things easier for you.”

If someone feels a compulsion to say something, I much prefer a straightforward “I’m sorry to hear that” or a succinct “That really sucks” over any attempt at uplifting, inspiring words. I hear from friends in my life who also have chronic illness and they’ve shared some doozies that well-intentioned folks have said to them but my friends are often too kind to say what they really think. So I’ve blogged it here as a public service.

When you aren’t sure what to say, you typically can’t stick your foot in your mouth if you’re saying nothing.