Coming to terms with my own MS diagnosis let me help others

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by BioNews Staff |

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Five photos showing individuals with multiple sclerosis, who are sharing their real-life stories during MS Awareness Month, are hung with clips on a string above the words 'MS Community Spotlight.'

Kathy Young toasts a beautiful day with a glass of red wine in her backyard. (Photos courtesy of Kathy Young)

Day 23 of 31

This is Kathy Young’s story:

I was diagnosed with multiple sclerosis (MS) in 2008. It took about a month to get the diagnosis which, at that time, was incredibly fast. I was lucky to have doctor friends who pushed to get me answers.

My two little girls were 4 and 6, and I didn’t know how I would raise them — the fatigue and cognitive fog were devastating. Add to that the numbness, tingling, and pain. All of it was scary. And at that time, there was no patient advocacy, no virtual support groups, no “next steps,” no social media. Anything you could find on the internet was simply fear-inducing.

It took a lot to get used to MS. Understanding what brought on symptoms for me — heat, sensory overload, stress — took time. The unknown was the worst part. There was no planning, either for the course of the disease or my daily symptoms. I was a planner, so this new reality rocked my world.

Young poses with her two daughters.

After living with MS for about three years, I realized it wasn’t nearly as bad as I’d expected. I wished someone had told me that when I was diagnosed. So I decided to create a website to share my experiences and give people, especially newly diagnosed people, hope.

My MS patient advocacy work was born with that simple website in 2011. I had gone back to work only to find that I couldn’t keep up on the job — remote work wasn’t a thing then. I created my platform as a way to both share my message and generate income.

MS has changed my life in many ways — including providing a career change! I knew nothing about technology, but I learned how to create the website and eventually how to start a podcast. While very difficult, this work also helped exercise my brain.

Those two little girls learned to make simple meals, do laundry, do homework on their own, and help their mama. They are 23 and 20 now and the most empathetic, kind-hearted, hard-working souls of their age I know. MS did that.

MS has both taken and given in my life. It’s been 16 years since diagnosis and more than 30 since my first symptoms. That’s a long time, a lot of experience, a lot of wisdom.

To have my platform, which has given me the opportunity to meet so many people in this community, has truly been a gift. I’d never wish MS for myself or others, obviously, but there are gifts in it. I’m grateful that it’s given me an appreciation for life I don’t think I’d have without it.

In recognition of Multiple Sclerosis Awareness Month in March, the MS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MS, written in their own words. Follow us on Facebook, Instagram, and Pinterest for more stories like this, using the hashtag #MSSpotlight, or read the full series.