During MS Awareness Month, MSAA has been releasing a variety of programs and resources for the MS community. This year, we focused on the theme “Life with MS: Different Stages of the Journey” with programs related to: Pediatric MS, Young Adults with MS, Family Planning and MS, and Aging Well with MS. These topics explore the journey of the MS community and their life with MS from diagnosis and throughout their journeys.
As we know, people with multiple sclerosis can have very different experiences. From symptoms to treatments and types of MS, no two people are alike. It is with that in mind that we reached out to our online forum, My MSAA Community, and asked our members two questions pertaining to their advice and experience living with MS. By sharing their experiences with all those in the MS community, we hope to offer a place of support and encouragement to all – regardless of where they are in their journey.
We asked our community:
1. What do you wish you knew when you were diagnosed?
2. What advice has helped you that you would like to share with others?
Here are some responses we received – how would you answer? Do any of the responses resonate with you?
“I wish I had known that there was the possibility of hundreds of variables with MS, from symptoms to management, to types of MS, and later on, medications.”
“I wish I had known that temperature changes could turn my brain off.”
“I wish I knew that I would be fine. I’m a strong person and I forget that all the time.”
“When I was first diagnosed, I wish I’d known that with the advent of so many powerful, effective treatments for MS, I would not be facing an inevitable descent into disability.”
“The best advice I ever got was to remember that I was my BEST, and sometimes, only advocate. It is up to me to ask for what I need, as often and as long as it takes.”
“The expectations you have of yourself or of others may need to be changed, multiple times.”
“People! Write down your symptoms and questions! There is nothing worse than leaving the neuros office and remember something you wanted to ask!”
“Some of the most helpful advice I’ve received, and would also offer, is to take life in 24-hour parcels. Anyone — in perfect or less-than-perfect health — only has finite, 24-hour chunks in which to live their daily lives, so that’s helped me face obstacles with more ease. And on a rough day, remember that life is always in flux; a better tomorrow is on its way.”
My MSAA Community is a free online peer-to-peer forum for individuals with MS, their families, and their care partners to share information and their experiences with multiple sclerosis.
To join My MSAA Community, please visit: https://mymsaa.org/msaa-community/my-msaa-community-forum