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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Comments

  • Andrew says:

    Do people know of effective treatments for the fatigue
    that is part of MS?

    • Angel Blair says:

      Hi Andrew, thank you for reaching out to the MSAA. To talk with others living with MS about treatment experiences and feedback, you can do so online through our peer support forum My MSAA Community, https://mymsaa.org/msaa-community/my-msaa-community-forum. Here you can ask questions and talk with others about MS and its symptoms. You can also find additional information about fatigue symptom management and MS on our website here, https://mymsaa.org/ms-information/symptoms/fatigue/. Hopefully by working with your doctor you can find ways to help manage the fatigue symptoms in MS. Thank you again for reaching out and take care, Angel, MSAA Client Services Specialist

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