MS awareness events are an opportunity to build understanding

We still have work to do to correct misconceptions about the disease

Mike Parker avatar

by Mike Parker |

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We’ve all heard comments from people who aren’t educated about multiple sclerosis (MS). Some that I’ve heard include “My friend had that and is fine now,” “Eating better will fix you,” and “Try a parasite cleanse.” I have to chuckle at these statements. 

With March not far away, National MS Education and Awareness Month is just around the corner for those in the United States. Here in the United Kingdom, we have MS Awareness Week on April 22-28. On May 30, we come together for World MS Day.

All these things can be powerful tools to aid us in furthering people’s knowledge of MS. So what should people learn?

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First, I think more people in general should work on understanding what MS is. You don’t completely heal from it just by eating right. People don’t just get better, and it definitely isn’t a parasite. Our immune system is mistakenly attacking our central nervous system.

Second, no two people with the condition are the same. We’re all different, which is why MS has been nicknamed the snowflake disease.

Third, every day is different. You can wake up feeling OK and ready to take on the world and then fatigue will kick in and your body has had enough for the day.

Last, and most important for me, we didn’t ask for this. We don’t want to have to cancel a chance to see a friend. We’d like to come to that party. If we could get out and do things, we absolutely would.

We can foster education by being as open as we can about what MS does to us, how it makes us feel, and how we are forced to adapt to significant changes, not just in our bodies but also in our lives.

I’ve mentioned how the MS community on social media helps to bring MS into focus, which is a massive opportunity to help those who may have never had any connection to the disease see and understand the day-to-day struggles it causes.

It’d be fantastic to see more about multiple sclerosis on the news and in the press. Reporters could interview MS warriors and let those with firsthand experience explain it. A textbook is excellent, but nothing beats experience.

Anytime MS is spoken about openly is an opportunity I want to make the most of. I know how I felt back in February 2022, when my general practitioner told me to expect the diagnosis. I left his office in tears because fear had kicked in. And that was mainly because I lacked knowledge about the disease. I hope that by talking about MS, we can help people understand more about it and hopefully support someone who is newly diagnosed.

Orange is the color used to symbolize multiple sclerosis, so during each of these upcoming events, I’ll be living in orange, doing whatever I can to shine a light on what life with MS is like.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Rita Rodin avatar

Rita Rodin

Thanks Mike. Appreciate this article and your mantra.

Reply
JAMIE J PHILLIPS avatar

JAMIE J PHILLIPS

Hello Mike,

I just wanted to thank you for your article. I'll tell you what I tell others. I am so very sorry that you were diagnosed with this disease. I was diagnosed in 2015. I was alone at the doctor's office when I got my diagnosis. The shock was so great. I decided that I would get involved in the National MS Society Walk and try to do what I could to raise money for all of us. I was involved in the walks for 13 years until the Society decided not to have them in my city anymore. Your article was spot on. It was as if you were talking only to me, I could understand everything you said because I live with this each day, also. You have a great attitude and you'll need to hang on to that. This road we're on is long and at times, it can be pretty darn hard. But take it a day at a time, listen to your body, get the rest you need if you can, and stay positive if you can. And if you have a bad day where you feel like yelling or crying or whatever it might be. Allow yourself to be angry for that day and the next day, pick yourself back up and move on. Without knowing you I know that you're a strong person. You have to be when dealing with this disease. I wish the very best for you and your family. May God bless you always.
Sincerely,
Mrs. Jamie Phillips
New Mexico

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Matthew Wolze avatar

Matthew Wolze

Hey Mike,
I love this and I am 5 years in on my journey and I love your approach! Today in preparation for MS awareness month, I am going to get my fingernails done in bright orange, cary in my pocket my MS awareness ribbon pins and wear orange through the month. The nails will be a talking point to start the conversation. I to do the MS walk and am looking forward to it again this year. I am going to have one of my nurses take my picture tomorrow when I go in for my infusion (Ocrevus) and you guessed it all in bright orange! That picture will be going in my email, to ask my friends and family to support the brain damaged IV drug users, me included of course!
Keep that light shining bright!
Matt

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Tina Molinar avatar

Tina Molinar

Hi Mike when I was diagnosed in2004 I cried then I I prayed starred feeling locked up in my house I get migraines from the heat

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Katie bryant avatar

Katie bryant

I love this article it’s great and having MS myself it’s hard to live with but we are strong warriors that fight everyday so thank you for this article and for educating others

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Peggy Wills avatar

Peggy Wills

Great article about the Snowflake disease! I wish more was on media about it. Was hoping that the actors (Jack Osborne, Selma Blair, and many others would help with the awareness. But alas seems has not

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