Kathy Reagan Young is the founder of FUMSnow.com – a dedicated parent, friend, and professional, lover of reading, writing, and singing, who refuses to let her diagnosis define her. She’s anchored herself in information, inspiration, and motivation. Why? To give MS the finger and live the life she wants. And through her FUMS podcast and website, she’s helping patients across the country do the same. In Part 1 of our #PackChat, she shares how FUMS all came to be – and why it was so important to her to build this organization the way she did.
Time to read: 4 min
INTERVIEWER: I’m excited to chat with you to today hear more about your story, and in particular, what inspired you to start FUMSnow.com?
KATHY: Well it started about 11 years ago, when I was first getting diagnosed.
There was a good stretch of time in which I was waiting for my diagnosis, and of course I did the dumbest thing a patient could do while waiting for a diagnosis: I went online.
At that time, there weren’t any patient advocacy sites, or patients talking about what MS was really like. There were just a lot of scary things. Scary to the point that I actually prayed for the answer to be a brain tumor because from what I’d read, at least there were people who’d survived that, who had it removed or whatever, and went on with their lives.
What I recognized was that nobody walked away from MS. It was forever if you had it. Obviously, I didn’t want that. Because I thought that if I had MS, I may as well just pick out a wheelchair. It was going to be hard and it was going to get worse – that’s all I found online.
INTERVIEWER: Wow, so what happened when you got the official diagnosis?
KATHY: Once I did get my diagnosis, and I got a sense of what was going on in my body and what MS was like, I kind of got my legs under me. And once I got my legs under me, I was really determined to provide a soft place for people to land – particularly when they are waiting for a diagnosis or newly diagnosed.
My motivation in starting FUMSnow.com was for people to see that there is life after diagnosis, and lots of it, and it can be a really good one. And then its just kind of grown from there as I’ve learned more about the disease, more about living with the disease, more about other people’s experiences, and how to build more of a community of support.
INTERVIEWER: That’s awesome. What were you doing before all this?
KATHY: I actually started out on Capitol Hill working for a congressman, did some government affairs stuff beyond that. Oh, my gosh, it’s a long story. I was a pharmaceutical rep at one point and then decided to stay home with kids when I had babies. And all was well until I was diagnosed.
My two girls were four and six when I was diagnosed, and we also had two dogs, so that should really count for 10.
I remember my doctor saying to me at that point, “I’m glad that you’re not working outside the home because really you shouldn’t with MS because stress is bad. You really need to just take it easy,” I took that as a challenge and in typical Irish fashion, about a year later, I got a full-time job doing marketing for a physical therapy company in the area. I just wanted to prove him wrong.
INTERVIEWER: Wow, so did you prove him wrong?
KATHY: I loved my job, but the company was growing rapidly and about three years in it did turn out to be too much for me to handle. I remember one day, having trouble discerning between the gas pedal and the brake. And then I looked up and I couldn’t determine what which lane of traffic was the right one for me to be in! That was the moment I realized the cog fog had really taken over. I determined that I needed to reduce my stress, and that meant staying home.
Now here’s the thing: my paycheck quit, but our bills didn’t.
This FUMS thing was just a hobby at that point, but after I’d been home a little bit it started to feel more important. I started thinking more of the people who are in my same shoes, I started blogging more, and I started listening to these new things called podcasts, and I became so enamored with these people I was listening to. I think it’s because they’re in my ears, so I feel like I know them. It’s a very personal relationship.
When I clued into that, I thought, “I want to talk to people one-on-one like that. I want them to feel like they know me and feel they can ask me anything. So instead of just writing about MS, I started a podcast.”
INTERVIEWER: Amazing. How do you think podcasting has shaped you and FUMS?
KATHY: Hugely – podcasting has opened up so many opportunities for me. It has really provided entree to people and experts that I wouldn’t normally have entree to. I’ve met all these incredible people and a lot of them have sent other people my way. It’s fantastic.
For example, I got to speak to this super smart neuropsychiatrist from Columbia University for an hour about MS, and she answered all my questions.
If I’d called up and said, “Hey, it’s Kathy and I have some questions about MS,” I’m sure her office would be like, “Make an appointment, come to New York, whatever.” But instead I say, “I’m Kathy Reagan Young with the FUMS Podcast Show and I would like to interview you for my show.” And I’ve never had anyone say no!
INTERVIEWER: That’s incredible.
KATHY: It is, and the best part is I’m able to use my social media profiles to spread the word “I’m going to be interviewing this person or this is the topic. Do you have any questions?” And then I get to ask everybody’s questions. So I get to be the mouthpiece, but it’s like FUMS nation getting to ask all the questions. And it’s a blast.
INTERVIEWER: That’s awesome. So you’re interviewing all these amazing people – what kind of trends are you seeing in terms of how health care is evolving today?
KATHY: I think from a patient’s perspective, there are so many more opportunities to be educated now, which is great as long asyou can trust your source. At the same time, learning what sources to trust can be a tough thing to learn. I have these MS warriors that are much more educated than they had been, so they’re asking better questions and they’re getting more information as a result of having better questions, so that’s a really exciting cycle. Especially now that people have the opportunity to vet their information through other maybe more seasoned patients.
In terms of what people seem to be most interested in, of course, it’s symptoms. People want to know if they’re an anomaly or if others share the same experience, and then also, what are people doing for these things. And it is really amazing the different answers you get from neurologists about the same symptoms.
On Facebook, for example, people can pop on there and ask, what do you do for this? I see all the time “Oh, my doctor said this,” and then someone else says their neuro said a different thing,” and often somebody else will pop in and go, “Yeah, my doctor did too, and none of that worked so I drank quinine water, whatever.” Inevitably somebody has come up with some wacky thing that worked for them. And it may not work for somebody else, but heck, it’s worth a try.
INTERVIEWER: Wow. Do you think that transforms what the doctors are experiencing or how the healthcare system treats patients?
KATHY: Well, I can only imagine that depends on the mindset of the doctor. I say that because I was a drug rep when TV commercials were started for drugs. I remember the vast majority of clinicians I was calling on saying, “I hate this. These people are coming in and telling me what they want me to write and they’re very insistent because they think they know what they’re doing because they watched a commercial.”
And so I can only imagine that people are going in and saying to their doctor, “Well, on FUMS, she said,” or “I heard this or I saw on the FUMS Facebook page…” I’m probably pissing off some people. My hope is that they take it in the context from which it was offered. As a starting point for conversation. So I continually remind people that whatever I offer needs to be discussed with your doctor – that you should have a conversation and respect that your doctor probably knows a lot more than what’s on the internet.
Want more perspectives?
- Read our conversation with Jen Horonjeff of Savvy Cooperative
- See what Pat Dunn of the American Heart Association had to say about health literacy
- Check out VP of Member Services M’Kayl Lewis’ perspective on the Social Determinants of Health