What Not to Say When Someone Tells You They Have MS

It seems unbelievable, but this is a real-life example. A friend actually told me, “If I was diagnosed with something like that, I couldn’t handle it, I’d do something to bring about the end of my life.” Meaning, he’d kill himself. Just what I needed to hear a month after my diagnosis!

But I also understand; before I was diagnosed, I wouldn’t have had any idea of how to react to hearing that someone has MS. So here are some personal suggestions of what I like and dislike hearing from people when I tell them I have MS.

“My friend has an autoimmune disease. You have to rest/exercise/pray.”

Each autoimmune disease is different, and even among different people with MS, the course of the disease can be dramatically different. I understand that giving advice can be a way for people to express their concern, but if you don’t know much about MS, the best choice is to refrain from giving specific advice.

“My cousin has that. She doesn’t take those medicines and she’s perfectly fine.”

Another version of this one is, “My cousin with MS doesn’t follow any weird diet, and she’s as healthy as can be.” The implication is, “Relax. It’s not such a big deal; there’s no need to turn your life upside down like that.”

So, I’m glad your cousin is doing well. But first of all, are you really sure they’re okay? Are you sure they don’t have fatigue, cognitive problems, sensory problems, or some other invisible symptom of MS? Second, how long has your cousin had MS? If they were diagnosed recently, it’s not that surprising that they’re doing fine. The problems accumulate over time; if you want to compare, let’s talk in 15 years. Third, even if your cousin has stayed totally asymptomatic without changing their diet or taking medicine, there’s no guarantee that the same thing would happen to me.

I completely respect the paths that other people with MS decide to take in their treatment. But this disease is potentially very serious, and when I was diagnosed, my doctors told me that several aspects of my specific case suggested a more aggressive disease course. That’s why, personally, I’m going to do everything I can to improve my chances at staying healthy.

“If you think positively, I’m sure you’ll be okay.”

It’s true that thinking positively is important, but sometimes people exaggerate its impact. Maintaining a positive attitude is just one of many tools in the toolkit for dealing with MS, and I’m using as many of them as I can. But none of these actions guarantee that we’ll be able to stop the disease from progressing. Telling me that I’m going to get my MS under control by thinking positively ends up being a way of blaming me for my negativity if the disease gets the best of me.

“At least you don’t have something worse.”

Said to me by a meditation instructor.

It’s certainly true that an MS diagnosis isn’t the worst thing that can happen to someone. People with MS continue to lead rich, fulfilling lives, even if they have very severe symptoms.

But if you’re healthy and you don’t understand what it means to live with a degenerative illness, how about you let me reach those conclusions on my own? Or you could encourage me to be grateful for what I do have in my life, without implying that I’m complaining excessively. (Also check out this great post from My New Normals on this subject.)

“I saw online that people with MS can hardly walk. And you’re walking fine. You must have something else.”

The person who told me this was motivated by a deep concern for my well-being. She wanted to find a happy ending to my story. But MS takes a different form, with different symptoms, for each person. People with MS tend to have fewer symptoms when the disease is just getting started.

Plus, I’ve already gone through a formal process of neurological diagnosis: there’s no doubt, what I have is multiple sclerosis.

An expression of deep pain, as if I just said I have three months to live

If you’re a close friend or family member: thanks! But let me tell you why there are still reasons to be hopeful.

If I just met you: don’t overdo it, please.

The best reactions

I’m always happy when people ask me, “What’s that?” It’s normal not to know what MS is, and I don’t have any problem explaining it. And of course, I appreciate when people show empathy and ask me how I’m doing.

Personally, since I hardly have any symptoms right now, I’d rather people treated me like a healthy person, without any limitations. But since a lot of the hardest MS symptoms to deal with are invisible (fatigue, for example), I also appreciate it when they ask me about my health and if I have any special needs; there might come a day when I need it.

In the end, if you don’t know how the person with MS is doing, what they need, or what the disease is, the best thing to do is to not assume anything, but just ask.