What do you wish people knew about MS?

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Patients Multiple sclerosis

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Posted on

Hello everyone,

If you don't already know, this week of March 8th to March 14th) is MS Awareness Week in the US! As MS is so complex and is an "invisible disease" (it's not always easily visible to others), many people know very little, if anything about it.

What are some things you wish people knew about MS?

The more people who are aware of MS, hopefully the sooner we will find a cure!

This discussion is yours to share your thoughts and opinions.

Looking forward to hearing from you all,

Courtney

 

Beginning of the discussion - 3/12/20

What do you wish people knew about MS?


Posted on

I WISH THEY COULD SEE  WHAT A SILENT DISEASE THIS IS..MY SISTER WAS 26 WHEN  SHE WAS DIAGNOSED WITH RECURRING RELAPSE MS..SHE SUFFERS EVERYDAY

What do you wish people knew about MS?


Posted on

I agree with you @bri6762‍. At first, I didn't have visible symptoms and people didn't take my pain seriously. But now that my walking is a bit more messy, people stare. I don't know which is better or worse... I wish that everyone with a chronic disease could live a life with less pain and more respect from strangers (and sometimes doctors...). 

What do you wish people knew about MS?


Posted on

I could not agree more..my sister has to deal with dr's not getting along with each other when it comes to her health

What do you wish people knew about MS?


Posted on

I totally agree with you. MS is a silent disease.  One day you can feel fine, and the next, barely be able to get out of bed, especially if you have RRMS. I suffered with ridicule for years because "I didn't look sick" despite the constant pain in my legs and back from the stiffness and muscle spasms. Now my symptoms are far more pronounced, and they don't go away anymore. I lost complete use of my left leg now, and am confined to a wheelchair if I leave the house, which is almost never right now since of the whole coronavirus situation. 

Also, I am the primary caretaker of my son, since my spouse works full-time in an essential company, so now I'm Dad, teacher, cook, cleaner, and babysitter. 

What do you wish people knew about MS?


Posted on

I am so sorry that you go through that..it's not right.. You would think people have more compassion..but sadly they don't.

You certainly have your hands full

What do you wish people knew about MS?


Posted on

I wish people would know that it's not contagious! You'd be surprised how many ignorant people I've come across who've recoiled when they found out I have it because they didn't know what it was and assumed they could catch it from me... 🙄

What do you wish people knew about MS?


Posted on

I wish people would listen when you tell someone you can’t do something & not guilt you into doing it or make fun of you & tease you about the limitations that come with MS. I look healthy but my body isn’t. I wish that was respected even if you can’t see my illness. I don’t want you too because it can be humiliating!

What do you wish people knew about MS?


Posted on

  Some people who know a person with MS just think it is a disease that affects your balance to walk. They don`t realize that MS affects people differently. I have pain in my feet at times when it rears it`s ugly head, can be an 8 on a scale of 1 - 10. During the day can affect just trying to watch TV. At night can wake me up and disturb my sleep so much that I have to get out of bed to try and alleviate the pain. My wife understands and she feels bad for me so I try to be as quiet as possible so as not to disturb her sleep.                                                                                        If the pain starts in early evening I stay up as late as possible so I can try to exhaust myself to sleep. This works until the pain wakes me up, usually after a couple hours of sleep. This makes me vulnerable to the nodding off during the day watching TV or reading a book.                                                                                                                                    My Drs understand my condition and really listen to me and handle my problem with pain. They have prescribed appropriate medicine for my ongoing conditions, pain included. I just live with the occasional pain flare ups because I believe I have adequate meds to cover my pain about 80% of the time.                                                   Then the heat factor pops up. I recently did not attend a fireworks show that my daughters boy friends family put on at their farm. It was warm and humid and there were no bathroom facilities I would be able to use. The heat can affect me quickly and make me very sleepy. At times I need a bathroom quickly so this counts me out. My wife went on her own and I felt sorry I couldn`t accompany her.                                                                                              Enough about me because I really don`t dwell on these matters.      

What do you wish people knew about MS?


Posted on

I wish people understood that this disease is not "one size fits all". Just because your co-worker's sister's uncle has it and has been doing well for 10 years, doesn't mean everyone is or will. I was recently diagnosed in April 2020 and the amount of times I have heard these accounts is crazy. I always respond with "I am glad they are doing well, but I am just beginning on this journey and everyone's is different.". I know their comments come from a good place but sometimes it is maddening. Somedays the pain is heavy or the exhaustion is too much to bear and those without MS just can't understand. Comparing someone's else's experience, whom they may or may not know, is not helpful or comforting in most of these instances. At least it hasn't been for me. 

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