Community Views: The Strangest Comments Heard by the MS Community

If there is any doubt that multiple sclerosis (MS) is one of the most misunderstood diagnoses, then all one has to do is be a fly on the wall when someone with MS shares that they are living with the condition. 

To find out more about all the ridiculous things people say when they learn someone has MS, we reached out to followers of our Facebook page. We asked community members to tell us: “What is the silliest, funniest, or most face palm-ish response you have heard when you told someone you have MS?” 

Responses from more than 300 community members poured in. Here are some of their answers.

It is your fault you have MS

Doctors are not sure what causes MS. They believe it is triggered by a combination of factors, such as genetics, an abnormal immune response, and environmental factors. Still, that has not stopped some people from blaming MS on someone’s lifestyle, dietary choices, or even negative thoughts. Many in the MS community have been accused of living their lives in a way that made them responsible for getting MS, which is not the case at all. 

“My sister once told me that it was my own fault that I have MS. That I should have taken better care of myself.” 

“I had one girl tell me it was because I watched the news and ‘took that negativity into my body.’ All I have to do to be cured is change the channel?” 

“When I was first diagnosed, the on-call neurologist at the ER said it was my fault because I was not taking vitamins as I should be after gastric sleeve surgery.” 

“Do you think you did something to cause it?” 

That someone is too young – or too old to have MS

Curiously, community members shared that people have told them they were too young or too old to have MS. Most typically, the diagnosis shows up between the ages of 20 and 40, but that does not mean it cannot show up sooner – or later. MS does not discriminate based on age.

“I was in the hospital after just being diagnosed when my aunt said to me ‘You are too old to be diagnosed with MS. Uncle Ronnie was diagnosed at a younger age. You do not have MS.’ I was 44. She still refuses to acknowledge I have MS.” 

“You are awfully young to have that.” 

The right diet can cure MS

So many people shared that strangers are more than eager to comment on their diets, even if they do not know the person well. Diet does not cause MS, nor can diet cure it. 

“A ketogenic diet will cure MS and Hashimoto’s! I have Hashimoto’s too.” 

“You should change your diet. This from someone who has no clue what I eat.” 

“Have you tried cutting out those artificial sweeteners from your diet?” 

“You just need to cut out sugar!” 

Other things can “cure” MS

Yes, there are medicines that can bring relief from symptoms and slow the progression of MS, but there are no cures. A few community members shared that people have suggested some rather unusual “cures” for MS

“Years ago, my friend’s boyfriend asked me why I could not just have the lesions on my brain and spine removed to fix the problem?” 

“They said they had it too, but their MS was cured. I said there was no cure. She said she was cured because her ‘myelins’ were adjusted.” 

Thank you to everyone who offered answers. It is our hope that people who read this better understand what it is like to have MS thanks to your willingness to share your experiences.

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Community Views: What Society Believes About MS and Relationships

When MultipleSclerosis.net contributor Anita Williams wrote “Beggars Can Be Choosy” about what society believes about people living with the diagnosis, she hit a nerve. She brought to light many of the negative stereotypes that are often not openly discussed. 

After Williams’ article was shared to the MultipleSclerosis.net Facebook page, it sparked a response from nearly 150 community members. Here is what was shared. 

Having MS does not make someone broken 

Too often, people with MS can believe the lie that having an illness makes them hard to love or accept. There is a societal belief that having a disease makes someone “broken” or somehow “less than.” This is a horrible lie. 

When it comes to relationships, true love is unconditional, not transactional. Loving someone means loving who they are as a person, not loving how many chores they can do, meals they can make, or how much they can do for someone else. That kind of transactional love is not healthy. 

“This is exactly how I was made to feel. It is now 4 years after my divorce, and I now realize that I am a good person and not broken. I will be fine and, God willing, I will find the person who can love me as I am. My ex is the one with the problem, not me. He will not ever find the perfection he is looking for because nobody is perfect. He only thinks he is.” 

“Two days before I married, I was diagnosed with multiple sclerosis. The marriage ended, but not due to my illness. During our marriage, I often heard, ‘Wow, and he still married you?’ Yes, he did.”

A black woman looks lovingly down at her own heart in her hand.

Others believe someone with MS is “lucky” to be married 

So many community members shared that they, like the author, had been told that they are lucky to have a partner. This is never a kind thing for someone to say, nor is it true. Having an illness does not make someone less loveable. Some community members shared that they do feel lucky to have a partner. But truly, everyone who has a partner is blessed to have found love. 

“Ugh, it is true. I do not know how many times I have been called ‘lucky’ to have my partner. I wonder if anyone has ever told him he was lucky to have me. It is doubtful.” 

Both partners are lucky to have one another 

In a true partnership, both people will feel lucky to have one another. Each person brings their own unique gifts. Both people will give to one another, and both will receive – that is what partnership means.

Many in the community shared that they have no doubts about the value that they bring to a relationship. They know that having MS does not limit their self-worth. They also see that their partner is lucky to be with them.

“My husband is wonderfully supportive, as I am to him. A couple of years ago, he nearly died from sepsis and had to have his leg amputated. It was a dreadful time, and he needed a lot of nursing, which, at first, was hard with the MS. But we muddled through together, and I think we are even closer now.” 

“I am lucky to have my partner, and we are lucky to have each other. We take care of each other.” 

“In reality, I know I am lucky to have my husband with me, and he knows he is lucky to have me in his life. It does not really matter what anyone else thinks or says.” 

“Personally, I think he is bloody lucky to have me!” 

“Oh, way to go! I was married over 20 years before I was diagnosed, but I married a man with character, and he knows he is lucky to have me. I am not a victim. MS, nor any other disease, will never cheapen my value.” 

Thank you to everyone who shared. We are grateful to hear from so many community members about your personal experiences.

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Longing for Belonging: Advice from the MS Community

A person looking at the clock on their phone while laying on the couch getting ready to watch a movie.

Living with multiple sclerosis (MS) can be very isolating. This condition often creates feelings of being disconnected from others and the world. Many feel the longing to belong and forge relationships as they could before their diagnosis.

After posting an article written by MS advocate Devlin Garlit, we received an overwhelming response from community members. As Garlit said, Continue reading

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Can Certain Foods Trigger MS Symptoms?

A man mixing a bowl in his kitchen for meal prep, while a stack of food containers are piled behind him.

There is no one way to eat that is going to rid everyone of their MS symptoms. However, many people in the MS community have found that there is a direct link between what they eat and their MS symptoms. While every person with MS likely has a different list of foods they avoid, there is a lot of overlap in terms of the worst offenders.

To start a discussion about which foods make MS worse, we reached out to community members on our Facebook page and asked them to tell us: “Do certain foods trigger your MS symptoms?” Continue reading

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What People with MS Wish You Knew About MS Pain

A woman doubles over and squints in pain, holding her stomach and her back. The background shows the enlarged, abstracted outline of lightning bolts.

Pain can be one of the most challenging things in life to deal with. However, for people with MS, pain is often part of daily life.

While September was Pain Awareness Month, it is important to continue the conversation about the connection between pain and MS. To learn more about the impact of this connection, we asked community members to share their experiences and Continue reading

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Multiple Sclerosis and Communication Issues

A woman and man are having a conversation. The man has his eyes closed and is talking as a paragraph of lines comes out of a speech bubble. The woman's eyes are wide with a broken speech bubble as a completely empty thought cloud lingers over her head.

Although many people think of multiple sclerosis as primarily a diagnosis with physical symptoms, its reach is far more extensive. Since MS begins in the brain, it can impact one’s ability to communicate – namely, it often impairs memory and speech.

To find out more about the speech and memory challenges community members deal with, we reached out to members of our Facebook community and asked “Do you ever suffer from communication issues and expressing yourself with MS?”

More than 550 community members shared. Here is what was said. Continue reading

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Community Views: Do MRIs Tell the Whole Story?

An MRI machine sits in the bottom right hand corner of the frame. There are 3 question marks flying out of the machine with one that has a "no" symbol on it.

For many people living with multiple sclerosis (MS), the relationship with magnetic resonance imaging (MRI) is complicated. This imaging tool can be helpful in determining how quickly the disease is progressing in the nervous system, but can also give complicated results.

We turned to our community members to learn more about your experience with MRIs. We asked Continue reading

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Safety Precautions Can Be Extra Challenging for Those with MS

Living through the COVID-19 pandemic is difficult for everyone. However, it is certainly more challenging and stressful for anyone with a health complication, especially MS. In particular, quarantine and some safety precautions come with unique challenges for those with MS.

To hear more about how the MS community is handling COVID-19 protective measures, we asked our Facebook community: “What safety precautions have you found to be the most challenging with MS?”

More than 100 community members weighed in. Here is what you had to say. Continue reading

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MS and Self-Care During the Quarantine

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For most people, living through the quarantine is one of the most challenging and unnerving experiences ever. And yet, it can also be a time of boredom, as many are kept away from the places of everyday routines, from gyms to community pools.

To not just make it through but thrive during this time requires a heightened attention to self-care.

To hear more about how those in the multiple sclerosis community are handling Continue reading

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Advice from the Community: Awaiting an MS Diagnosis

Waiting is the hardest part. For anyone who thinks they may have MS and is undergoing testing, awaiting results can be scary and downright hard to deal with.

To learn more about how to cope during this challenging time, we reached out on the MultipleSclerosis.net Facebook page and asked: “What advice would you give to someone who is going through the testing and diagnostic process but has yet to receive a confirmed diagnosis?”

Almost 90 members of the multiple sclerosis community shared their hope and experience. Here is what they said. Continue reading

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