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My world with MS

My life & My world with MS no filter needed.

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Oct 20, 2015
Thank You
by: Anonymous

Thank you for expressing this! I have MS and have to use a wheelchair most of the time because I can only walk very short distances and can only stand a very short amount of time. Just today somebody again told me how they just saw a celebrity with MS on TV who took medication that really worked for them, ate healthy, was determined to "beat" MS and now live a pretty normal, active life..., dancing, etc.

When people tell me this, there is always the inevitable questioning, advice, judgment, etc. indicating that I should also be able to "beat" MS and not use a wheelchair. I get really tired of explaining that MS affects people differently and while I fought tooth and nail not to lose my ability to dance, hike, run, canoe, and all the outdoor things I used to also love..., and most of all, fought to walk with my 4 year old and run with him and play with him on the playground...no amount of will power, medication, positive mindset, etc. was able to stop the gradual limitation on my mobility.

I am truly happy for them when people with MS do so well as some of the people on TV, but sometimes the way that success is presented makes it sound like anyone can "beat" MS and that MS is very treatable and even curable. That may be true for some, but not for me and several people I know who live with the reality of more severe MS.

I cringe when I see those kind of interviews because I know that it means I will face even more judgment and questioning about my decline when "MS is so curable...."

Sep 12, 2015
thanks for posting
by: Astrid


Sep 12, 2015
Your Passionate Plea
by: Akrista

Thank you for your passionate plea. I have always wondered why the ads for the medications only show people running marathons, riding bikes, smiling as if nothing is wrong, and generally healthy looking.

Where are the ones who are actually experiencing the devastating effects of MS? Just saying...

I know that there are many people who will look at you and my husband and say "you look good" or "you don't look sick". But the truth, as you so passionately described in your video, is that everyday is not all a bed of roses - excuse the cliché - some days are a living hell.

One celebrity who does talk about the reality of living with it is Montel Williams. Maybe not in the very beginning, however, now he tells it like it is. And I agree, there needs to be more. Montel cannot reach everyone. If more celebrities with MS step up and share the reality of their stories, it would definitely help those without resources in their struggle with MS.

Thank you again for your passionate plea. Hopefully it will draw more of those fortunate few into the limelight about the realities of living with multiple sclerosis.

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