The Mighty Logo

14 Things People With Multiple Sclerosis Wish Others Understood

The most helpful emails in health
Browse our free newsletters

When you have a chronic illness like multiple sclerosis (MS) that is often “invisible,” there can be many misconceptions that come along with it. From people thinking you look “too healthy” to be chronically sick, to believing your MS can be “cured” with some exercise and a better diet, these misunderstandings can be very harmful to those who live with MS.

In people with MS, the immune system causes inflammation that damages the myelin and nerve fibers in the brain, spinal cord and optic nerves (which make up the central nervous system). Damage to areas of the CNS can cause various symptoms such as numbness, fatigue, weakness or pain. Although some symptoms may be visible, many are not, which can make the condition difficult for others to understand.

That is why we asked our Mighty community to share what they wish people understood about MS. It is important to know that all illnesses are different, and the effects are not always visible. Learning about the reality of MS can not only help further education of this life-altering disease, but also show support for those living with it. If you live with MS, know that we see you, and ms support groups that understands what you are going through.

Here is what our community shared with us:

  1. “I wish people understood that MS looks different for everyone. Just because one person has a certain symptom or issue doesn’t mean that everyone will! People with MS can look totally healthy on the outside but because it might not look like we’re suffering, people are skeptical. No two MS patients are alike!” – Christine Y.H.
  2. “I might look well but by god I’m going through hell on the inside – head pain, eye pain and every nerve ending giving you grief!” – Ali D.
  3. My husband is in a wheelchair… But, his mind is clear. Look into his eyes and speak to him like any other person. Don’t look at me to answer for him because it makes you uncomfortable. You might be surprised at his intelligence, or his accomplishments before he had to stop working.” – Joan W.A.
  4. “It’s not contagious.” – Dawn B. 
  5. “Yes, I know what I need to do take excellent care of myself and I am doing so – more than 24/7. Please hear this. Because I have MS does not mean I’m doing something ‘wrong’ or ‘not good enough.’ Quite the contrary.” – Debbie A.G.
  6. “The pain and fatigue don’t go away just because I am ‘in remission.’ Also having a bad day means I am having a bad day, not always a flare, but sometimes it does.” – Anna C.
  7. “I wish people understood that it’s unpredictable and therefore it’s very hard to pre-plan things. Doing the simplest of things can cause such extreme fatigue in me and I need to nap every day. I just can’t stay up late anymore or go out as much. I wish people realized this is not me being rude or boring, it’s literally my body not cooperating. Instead of taking it personally or thinking I’m [boring], I wish for more empathy and understanding.” – Sarah D.
  8. “Things can change at the drop of a hat and when people say things like ‘but you went for a walk earlier’ or ‘you don’t look sick’ etc, they don’t believe you when you try to explain ‘yes I did but I pushed myself.’ Or ‘I’m in constant pain.’ All I can say is that healthy people, you don’t have to understand it, I just want you to accept it.” – Mighty member Evang
  9. “It sucks. All day, every day, it sucks. We don’t talk about it because it gets boring, and I think we all try to focus on the positive, but at least five times a day I am consciously aware that having MS sucks.” – Jennifer B.
  10. “[You have to] get plenty of rest for better days.” – Rose W.
  11. “Not everyone has the same type. And people who were diagnosed 30 years ago are more likely to be in a more advanced state.” – Joan W.A.
  12. I can look completely normal but feel like I’m dying inside. Fatigue, constant aches and pains, insomnia, nerve damage, and a myriad of other chronic illnesses that are commonly associated with or amplified by MS really make me feel like a running shoe strapped together with decorative duct tape. I’ve made it my goal to choose to laugh and smile despite my issues, but just because I do, that doesn’t mean I don’t struggle to do basic things.” – Katrina C.O.
  13. “Living with uncertainty is exhausting so please be patient and understanding.” – Anna C.
  14. “Just because our bodies may be weak, doesn’t mean our minds and spirits are!” – Mighty member ediecwitner

To learn more about multiple sclerosis, check out the following stories from our community:

What do you wish others understood about multiple sclerosis? Let us know in the comments below.

Originally published: March 14, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home