Blogger, podcaster and leader in teaching us all to say, “FUMS”
Welcome to “7 Questions with A Couple,” a new monthly series on our blog that will include quick conversations with a variety of experts and influencers from throughout the MS community. For our second post in this series, we are so excited to introduce Kathy Reagan Young. Kathy maintains the nationally recognized FUMS blog and podcast, is the Guide for the MS Healthline App, admin for the Healthline: Living with Multiple Sclerosis Facebook page and recently launched the Patients Getting Paid Facebook community. Yeah, every time we think we’re busy, we realize it’s not nearly as busy as Kathy is!
1. Getting diagnosed with MS is devastating news for anyone. How soon after you were diagnosed in 2008 did you decide you wanted to share your story and give others hope?
I took 3 years to digest the news, live with it, process it and see what this “MS thing” was all about. At the time I was dx’ed, I had two little girls – 4 & 6 – and my husband was working 11- and 12-hour days a minimum of 6 days a week. It was a lot to take in and deal with. I never forgot how hard it was to find any “good news” about MS online when I was waiting for my diagnosis and afterward! It was a scary time with so many unknowns and no one to ask anything about it. So 3 years post-dx, I started a blog to try to provide a soft place for people – especially newly diagnosed – to land. Somewhere that was upbeat and positive and gave a perspective that wasn’t available.
2. You are very kind and compassionate, so what happened that made you so angry to say, “FUMS,” and decide, “Yeah, that’s it! THAT is what I’m calling my blog and everything that goes with it.”
I wanted to share what my life was like with MS and what was working for me – namely, envisioning my MS like the MonSter it is, and speaking to it as it deserves by telling it, “FUMS” every day. In so many ways, this disease “does to us.” When I found a way to “do to it,” I felt empowered. I felt like I finally had a say in this fight. It seems small – but it felt big – and it felt like something I should share with other people going through the same thing.
3. You are one of the most driven leaders within the MS community. What keeps you motivated to keep building your reach and furthering your mission?
I’ve had a varied career. If you saw it on paper, it would make no sense. But I now know it was all in preparation for me to do this. I started on Capitol Hill on a Congressman’s personal staff, then went on to his Subcommittee staff. I learned how things get done legislatively and the power of communication – particularly the written word. I saw firsthand how inspiration could lift entire communities. Next, I did some lobbying where I learned the power of sharing information and persuasion. I started a newsletter called “The Washington Update” where I learned the power of disseminating information. I did sales for a pharmaceutical company where I learned how to read and understand clinical studies and medical literature, and how sharing the information could impact people’s lives. I did marketing for a physical therapy company where I learned that patients can only be helped by technology, medicine, and science if they’re aware of what’s available and motivated to get the help that is available. All of those things have informed the patient advocate that I’ve become. My tagline is my mantra: I provide information, inspiration, and motivation for living your best life with Multiple Sclerosis.
4. You do a lot to motivate and inspire other people living with MS. Who/what inspires and motives you?
My dad was my first inspiration. He was an incredible man that just wanted to help people. Period. He wanted to make things better for people if he could. Through him, I saw the ripple effect of helping one person, and how that helped their family, and how that helped their employer, and how that helped their community. And honestly, helping others feels so good, it’s almost a selfish act! Then I’m motivated and inspired by the people with MS that feel so alone and don’t have access to the resources that I do. I feel a deep obligation to them. I am one of them. They are my people, and I owe it to them to help if I can. I’ve always believed if you know something that can help someone else, it’s an absolute obligation to share it. I’ve found a lot of inspiration for other patient advocates like you two – sharing so much of your own journey and supporting other along the way. And finally, my kids inspire and motivate me in all things – especially to be a good person. I define being a good person by helping others.
5. In addition to all you are doing with your blogging, podcasting and influencing, you also have a family and are raising two daughters. Oh yeah, and you have MS. What are your keys to maintaining balance in your life?
What is this foreign thing that you speak of – this “balance?” I think the various aspects of life that need the most attention wax and wane, and my attention goes with it. Whatever is in most need, gets the most attention! That doesn’t leave much time for ME – which isn’t too healthy (and I wouldn’t recommend it!) – but it is what it is. I also think, looking back, being so busy has been a gift. It really hasn’t allowed me to “ruminate” on things – like MS or the “what ifs. Downtime and quiet are kind of the enemy for me. So I push until I can’t push anymore, then I take a break! Probably not the best idea, but it’s working so far!!
6. What accomplishments and successes with your MS work are you most proud of?
When I get a message from someone saying that they learned something from my podcast, or my FUMS Friday Night 6-Pack newsletter helped them somehow, or an article I wrote made them laugh – BINGO. That’s the sweet spot. Knowing that I’ve added value in some way to anyone’s life is a huge accomplishment in my eyes.
7. As someone who’s lived with MS for around 12 years, what is the most important piece of advice you can give to someone who was just diagnosed with MS?
Breathe. Just breathe for a bit. Most likely this won’t be nearly as bad as you’re thinking right now. Know that there is so much information out there for you and research going on right now that I’m confident we’re moving in the right direction. When I was diagnosed we had just 3 DMTs. We’re at over 20 now. We know so much more than we knew then, and that was just 12 years ago. So much is on the horizon, and we have so many really dedicated, smart people working on our behalf. Take care of yourself. Do what makes you feel good. Dial down your stress – and maintain or find purpose and productivity. Don’t let this disease define you. You tell IT to get behind you because you have things to do.