Let's Talk Advanced MS: What We Wish People Knew
Last updated: December 2021
Here at MultipleSclerosis.net, we are lucky to have engaged advocates and community members with a variety of MS experiences. It is important that we take the time to highlight and share everyone's perspectives - including those with advanced MS or PPMS.
Only those who live with MS understand the painful impact. Muscle symptoms, perception issues, and cognitive challenges. It all is a part of the unpredictable chronic illness life. We wanted to know a little bit more. We asked our MS community their thoughts by asking "Do you live with advanced MS? What do you wish people knew about your MS journey?" and boy, did they share some hopeful and engaging responses.
The reality of advanced MS
Within this article, we'll be sharing some of those responses - and providing an honest look at the reality of advanced MS. Think this is all? Think again. We already covered the importance of representation and as well as a look at some of the biggest challenges. That's right, we went there.
My life is more than MS
"I am more than MS. It is one small part of me."
Okay, yes, MS is a chronic life-changing condition but it does not define my life. Please do not just ask me about my condition or ask inappropriate questions about my treatment or mobility aid. The idea is that people would respect certain boundaries and ask about other parts of our lives. Ask us about Netflix shows, favorite hobbies, or the latest internet craze.
MS can happen to anyone
"I would want people to know this could happen to them or someone they love. I would want them to show me compassion towards my situation."
Multiple sclerosis does not discriminate. It impacts all ages, genders, and nationalities. It is a painful reality that many people and their loved ones face. You may even have a six-degree of separation between yourself and someone with MS. A little compassion and empathy can go a long way.
I struggle sometimes
"That I wish I had full use of my legs, had more energy and not so much pain."
Those with MS aren't always happy-go-lucky. While the community remains a hopeful one, we're all allowed to have our dark days. Losing physical capabilities with an incurable disease is enough for anyone to be consumed with sadness. Showing emotional support and helping out with menial tasks can help a loved one with MS grow through what they are going through.
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