Let's Talk Advanced MS: Representation
There is quiet acceptance when we find a connection with someone else. This is especially true for those who live with multiple sclerosis (MS).
Here at MultipleSclerosis.net, we are lucky to have engaged advocates and community members at different places in their MS journeys. It is important that we take the time to highlight and share everyone's experiences, including those with advanced MS or PPMS.
With representation comes validation. With validation comes confidence. Raising MS awareness helps eliminate stigma, improve research opportunities, and create community. It allows those who live with different forms of this condition take back control.
The reality of advanced MS
We asked our MS community their thoughts on advanced MS or PPMS representation by asking "If the main character in a TV show or movie had progressive MS, what would you hope that character portrayed?" Boy, did you share some hopeful and engaging responses. You provided an honest look at the reality of advanced MS.
Using mobility aids
"One of the main characters in the latest season of Goliath is an uber-wealthy corporate mogul. She's also a villain. I like that even if she uses a cane and deals with fatigue, she's still out there doing her evil things."
An accurate depiction of balance and coordination problems would offer a sincere look at managing tasks and situations with advanced MS. The choice to use mobility aids can be challenging no matter where you are in your MS journey. Showcasing this would validate a lot of those struggling in this space, both physically and mentally.
Determination in the every day
"Courage and determination. Show them doing everyday things."
Determination is such an important piece of managing life with MS, especially within those daily tasks. It not only takes a lot of courage and fortitude to keep going but spotlighting this can really bring light and respect to those who live it daily.
The reality of disease management and progression
"The pain, the isolation, the fear of it never-ending, and getting worse as time progresses. The canceled plans and lack of energy."
Without a cure, people living with MS face a very real fear of what MS progression will look and feel like over the course of their life. This weighty feeling can bring on thoughts of loneliness and depression and impact relationships with loved ones. This type of representation would shine a light on this unfortunate reality and help other people understand the emotional toll.
Our community is waiting for you
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Think this is all? Think again. Check back soon for a candid discussion around the biggest challenges of living with advanced MS as well as important things that people know about life with this progressive condition. That's right, we went there.
Our community is waiting for you. Get the support and validation you deserve today.
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