What I Want to Say When You Ask How I’m Doing with MS

Do you really want to know?

How are you? It’s a simple question.

When asked, it’s one that I have difficulty answering. Or should I say, it’s one that I have difficulty answering honestly.

In a culture that tends to use this question as more of a greeting than a genuine inquiry into someone’s well-being, it can be hard to answer truthfully when you’re in pain.

But the truth is, living with multiple sclerosis (MS) is limiting on the best days, and incredibly painful on the worst.

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What I’m leaving out when I say I’m OK

When someone asks how I’m doing, I usually tell a white lie. I say I’m doing “OK.”

I don’t ever say “fine” or “good.” Those would be outright lies.

But I never tell the truth, either. I think it’s because there are too many truthful options — and none of them are the answer people are looking for.

I don’t say:

I have MS and feel like crap.

My feet are on fire and my knees hurt.

I have this recurring pain that moves from hip to hip, then settles in my lower back, before returning to one hip, then the other, and then back to my back.

Still walking my dog with the use of a cane because my balance is a mess and I need to sit every 20 minutes or so because I’m tired and my legs hurt.

I certainly don’t say:

I have a headache. A daily, persistent headache that is my constant companion, and has been for almost 7 years.

On a scale of 1 to 10, it’s a 5 that shoots up to an 8 most evenings, which is an improvement over the 15 to 20 it was when it first came on and the doctors in the ER thought I was having a stroke.

It never, ever goes away no matter what I do or the meds I’ve taken to combat it.

I never say that.

Maybe we’re asking the wrong question

When somebody asks how I am, they don’t want to hear my medical history or even my current state. They really don’t, and I don’t blame them.

They want to hear “fine” and not much more, so that we can get on with whatever we need to get on with. That is the way of the world. It was my world for a long time too — before MS.

To be honest, when I ask you how you are doing, I don’t want your medical history. If you are not fine, I’m not sure that I want to hear that either.

I mean, I hope that you are well, I really do, as I am sure you do me when you ask, which is why I say that I’m OK. So you can nod and smile and we can get on with getting on.

You don’t want to know that I am a square peg that does not fit in the round hole of society. You don’t want to know that I’ve been forced to retire prematurely.

You don’t want to know that other than walking the dog, my days are filled mostly with reading, watching TV, writing, and spending time on social media.

You don’t want to know that my daily pain and the limitations and restrictions imposed on me by MS often make it feel like I don’t really have a life.

It makes me wonder if we’re all asking the wrong question when all we really want and expect is a surface-level response.

Mind you, most, not all, friends and family members want to know more. They want me to go deeper because they care.

That is not to say those who don’t want any depth don’t care. Caring just doesn’t fit their agenda. And I don’t blame the round holes. Heck, I used to be one.

What not to say to someone about their chronic illness

I honestly don’t expect you to do anything about my MS. I really don’t. I don’t expect the society of the healthy to change its shape and to adapt to the square peg that my MS has turned me into. I really don’t.

But if you are persistent in asking how I really am, and I tell you, here are some things you definitely should not say in reply:

You should meditate. Seriously. That would help you.

Exercise on a daily basis. Cardio and weights. That will fix you up.

Deep breaths, 6 times a day for 10 minutes. People don’t breathe right. You have to breathe right.

You should eliminate gluten from your diet. Gluten is a killer.

Give it time. It will go away.

Take this supplement I just heard about. It works miracles.

Drink more water.

You’re not thinking positive thoughts. You have to adjust your attitude and outlook. Turn that frown upside down and be more positive.

When I hear this kind of advice from people who are not doctors or medical practitioners of any kind, I know they mean well. However, more often than not, unsolicited medical advice comes off as vapid and insensitive.

If you want to say something, say “I’m sorry to hear that,” and leave it at that.

If we know each other well and care about each other, you can add, “I know I can’t help you, but if there is anything I can do to make life a little better, please let me know.”

If you say that, then I can ask you to change the light bulb that I can’t reach unless I stand on the stepladder, and I can’t stand on the stepladder because my balance is awful, and I don’t want to fall off and break my arm or crack my head open, adding to my issues.

Once you’ve changed the light bulb for me, we can then sit on the couch and watch some TV because that is about all I can do right now.

But other than that, I’m OK. Thanks for asking.

Take care of yourself

If you have MS, I will say this: I know it’s different for each of us, so know your limitations, which are different than my limitations. Strive to reach them, and maybe even exceed them, now and again.

But first and foremost, take care of yourself as best you can so that you can be as OK as possible for as long as possible. OK?

Article originally appeared on April 15, 2021 on Bezzy’s sister site, Healthline. Last fact checked on April 15, 2021.