At a Loss for Words: What Not to Say to Someone Living with MS

These 5 Bloggers Tell Us What You Shouldn’t Say to Someone Living with Multiple Sclerosis – And One Surprising Thing You Should

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Tracey Ruff

For those living with multiple sclerosis, life is already difficult enough. Therefore, the last thing they need is well-meaning people saying something insensitive or dismissive about their condition. If you know of someone living with MS and want to have a meaningful conversation with them, then brush up on your knowledge of MS, give this post a read, and learn about those phrases that you should not - under any circumstances - say to someone living with this chronic condition (even if you’re a family member or friend).

Daily Challenges

It goes without saying that life with a chronic illness comes with its challenges – be they emotional, mental, or physical. For those living with multiple sclerosis – a neurological condition that affects around 2,5 million people worldwide – some of these ‘multiple’ challenges include relying on trial and error methods for treatment, dealing with the condition’s unpredictability, and living with fatigue, mobility problems, muscle spasms, and neuropathy (to name but only a few of these disabling symptoms).

While many of these challenges are part-and-parcel of the condition, there is one challenge that people living with MS shouldn’t have to face: receiving insensitive or belittling comments about their condition. You see, we may all have good intentions trying to give advice or encouragement to someone with a chronic illness, but as you will see below, sometimes just listening – rather than what can actually come across as unintentionally belittling – is all it takes to be there for someone facing the difficulties of daily life. Below, we have put together a post compiled from feedback from five MS bloggers on things you should not say to people living with MS (and one thing you should).

Words from Willeke‑Maya

Willeke-Maya is the author of Ireland, Multiple Sclerosis & Me. She was diagnosed with MS in 2005 and uses her blog, as well as writing for others, to convey optimism about her life and condition. Here are a few of Willeke’s experiences, which highlight how ignorant and judgemental people can be when it comes to MS.

Willeke often has to adopt a ‘stern’ look on her face because of facial pain (trigeminal neuralgia). She has told her friends about this pain, yet she still received the comment, “Oh, will you just smile, please! Life is not that bad!”

She’s also had to retire from work because of her ongoing MS symptoms that made her work tasks impossible to do. Despite this, her colleagues still didn’t acknowledge the severity of her condition, with many quipping, “It must be great being on sick leave so much; it’s like being on a long holiday!”

And on one occasion, she lost her balance when a train flew past her and someone said, “Look at her! Monday morning and still drunk!”

Willeke also says that she’s developed a knee-jerk reaction to people who have become the judge and jury of what her life with MS should be like, even though they’ve never educated themselves about MS. She’s had to learn to walk away from people’s name-calling and backstabbing, as she’s come to realize that what they think doesn’t diminish her value as a person.

It’s an Invisible Illness

Richard Boughton, who has written for us before, keeps his advice short and simple and says that the number one thing not to say is: “But you don’t look like you have a disease.” As Richard says, phrases like these are an invalidation of what someone with MS is going through. He also suggests that people stop dismissing his illness by offering ‘solutions’ like eating right, taking vitamins, or getting exercise.

Other posts you may be interested in on the MyTherapy blog:

Your Tired and MS Tired Are Not the Same Thing

Dave Bexfield, who is the founder of a website that is designed to motivate those with MS to stay as active as possible, offers the following advice: never start a sentence with, “But have you tried …” or talk about someone you know “who lived a full life with MS”. Also, when someone with MS talks about fatigue, Dave says you shouldn’t chime in about how tired you are. In his words, “MS fatigue is not remotely the same as you only getting five hours of sleep last night. And no, an extra cup of coffee doesn’t help!”

Support is Better Than Suggestions

Ashley Ringstaff was diagnosed with MS in August 2010. She writes regularly and you can view her work here. In one of her posts, she mentions that she’s had to bite her tongue on many occasions. Here’s Ashley’s list of things you should definitely avoid saying:

  • Aren’t you too healthy-looking to have MS?
  • Try this herb; it helped my cousin’s uncle’s sister’s friend who has MS.
  • Well, aren’t you taking meds? Then why is your MS still bothering you?
  • Are you contagious?
  • Stop using MS as an excuse. You can’t feel that way ALL the time.
  • Oh, TRUST me, I know exactly how you feel!

While Ashley says that it’s not that she doesn’t appreciate people wanting to help out with their suggestions, she’d much rather have support – and not generic advice – from individuals. She’s also had to learn that when some people ask how she’s doing, they are only doing it out of politeness, and not because they genuinely want to know how she’s feeling.

There’s One Thing You Can Say

The last list of things you shouldn’t say to someone with MS comes from Yvonne deSousa, who was diagnosed with relapsing-remitting multiple sclerosis six months after her 40th birthday. Her sister, Laurie, was diagnosed with MS ten years before. Her blog is dedicated to putting a smile on the faces of those who can relate to “some of the bizarre circumstances that arise from MS”.

When her sister was diagnosed, Yvonne wanted to be that sympathetic person who wanted to make hopeful, comforting comments and offer advice to her sister. And then ten years later, she was on the receiving end. Yvonne understands that people do mean well, but her advice on how to be well-meaning without making someone with MS scream can be found in the list of what not to say below, which comes from her memoir, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis:

  • Isn’t that what Michael J. Fox has?
  • You could die from this you know.
  • You can’t blame MS for everything.
  • You’re tired? I’m really tired.
  • Oh, that’s nothing – I get that all the time.

Also, Yvonne says hearing the phrases, “I know, right!” or, “I can totally relate”, followed by a story or comparison that doesn’t relate at all, are some of the most frustrating and upsetting things for her. “What makes this tough to hear is that the speaker thinks they are sympathizing, but they are actually minimizing. If you try to express that, then you are the whiner. Truly, it makes me want to cry because it becomes clear that the speaker doesn’t care.

Case in point: I was trying to explain to some good friends why I would only be able to attend an outdoor summer activity if it was a low heat, low humidity day. One friend, who has known me the longest, replied with, ‘I know. I find that as I get older, the heat and humidity are kicking my ass too.’ Well, that may be so. But what I go through is actually having trouble breathing, thinking, moving, and functioning.”

And while Yvonne strongly believes in keeping a positive attitude and smiling whenever possible, it is comments like these that make her want to break down in tears.

“It just seems to exemplify how alone you can be with MS, even amongst people who truly care about you.”

Now, if you are still at a loss as to what to say to someone with MS after reading the above, then Yvonne suggests trying her “no-fail example” of something that is perfectly appropriate to say: “I am so sorry to hear that. That #@&$% sucks!”

It’s About Understanding

While MS is a highly unpredictable condition with symptoms and severity varying from person to person, one thing is certain: you may have good intentions, but you need to keep in mind that your well-meaning statements can come across as both disparaging and unsympathetic. Try and avoid offering generic or misguided advice, brush up on your knowledge of MS if you know of someone living with it, and never equate what you are going through or feeling with someone’s experience of MS. Be mindful and rather listen and take a genuine interest in how the person is doing. Hopefully this advice from these MS bloggers will help you have a real conversation with someone with MS – and prevent you from sticking that proverbial foot in your mouth.

Take a look at some of the other posts on the MyTherapy blog:

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