Multiple Sclerosis: Employment & Disability - Part 1 of 3

Multiple Sclerosis: Employment & Disability Part 1 of 3 [00:00:00] Meghan Beier, PhD (2): Welcome to the Find Empathy podcast, where we discuss the interaction between health and emotions. Make sure to subscribe, to be alerted when new episodes launch. My name is Dr. Meghan Beier, a clinical psychologist specializing in chronic illness and disability. We are nearing the end of our first series focused on multiple sclerosis. And our last three topics are going to focus on employment and disability, cognition, and adaptive sports. [00:00:36] Meghan Beier, PhD (2): This next topic is employment. And to start it off, I wanted to share a few facts about employment and multiple sclerosis. In a 2015 manuscript entitled, "Multiple sclerosis, etiology symptoms, incidence, and prevalence and implications for community living and employment" it was found that 90% of people with multiple sclerosis have a work history. Two thirds of individuals with MS are working at the time of their diagnosis, but only 20% are still working 10 years after that diagnosis. According to that article, there's several reasons for this drastic loss of employment. And some of those reasons include physical symptoms, cognition, and fatigue, which interfere with workplace productivity. But there's also some additional research that suggests that workplace barriers are an even larger part of why people leave their jobs. These workplace barriers include things like bias or downright discriminatory practices from leadership or coworkers, lack of knowledge or access to workplace accommodations or the lack of flexibility to accommodate unpredictable MS symptoms and appointments. I was never taught in graduate school, how to help my own patients navigate through this challenging maze of vocational issues. So for this particular topic, we're going to do something a little bit different than we have in prior episodes. This is going to be a three part series in which each part is released once per week for the next three weeks. One reason for this is that I just couldn't stop asking these experts questions. The content and expertise was so valuable that I didn't want to cut it short. And so for week one, this week, we're going to focus on the idea of retraining. I talked with Kathy Reagan Young, an individual living with multiple sclerosis who left her job due to the impact of her symptoms. But then she did something unique. She created a home business that could accommodate her symptoms, and now she's helping other people living with MS do the same thing. Next week in the second week, we're going to focus on workplace accommodations and workplace disclosure of diagnosis with Joe Stuckey, M.S., C.R.C.. Joe is a vocational counselor who works for the university of Washington's MS Center. He will teach you how to help your patients with MS navigate when, how, or even if they should disclose their diagnosis to employers, as well as what kind of accommodations can be requested. In the final week, that third week, you will hear about applying for disability from Tracy Tyson Miller, a disability attorney that specializes in multiple sclerosis. She discusses how to help your patients decide when to apply for disability and then how to help them navigate through that process. For those who are following along for continuing education credits, this three-part series will provide two and a half CEs and can be collected at the end of the three week series by clicking on the link in the show notes, there so much valuable content in these next three interviews. And I really hope you enjoy them as much as I did. Kathy Reagan Young [00:03:59] Meghan Beier, PhD (2): I'm super excited about this episode in particular, uh, employment issues are something that I talk about with almost every single person that I talk to. And so I'm really excited to have Kathy Reagan Young as part of this episode. And she's going to share a little bit about her journey, um, and how she's helping others. But can you, uh, Kathy, can you share a little bit about your diagnosis with MS and your journey thereafter? [00:04:27] Kathy Reagan Young: Sure. Yeah. I, um, was diagnosed with relapsing remitting MS in 2008. And, um, that came as a total shock to me. Although when I look back, of course, like all of us go, oh yeah, I guess maybe that was a symptom all those years ago. So I was diagnosed in 2008, but honestly, I can trace the symptoms back to 1986 or so. So I've had it for a very long time. Um, I was a stay at home mom at the time that I was diagnosed with two little girls, four and six at the time. And my doctor, my [00:05:00] neurologist at the time said to me, it's good that you are a stay-at-home mom, because stress, stress is very bad for you. So don't ever for people with MS, don't go back to work. So I knew from that point on that. He had never stayed home with kids, obviously, because that is the most stressful job I've ever had. And so when my kids, when my youngest was in school full time, which was, let's see, two years later, then I went back to work and I went full time and, and loved it for as long as I could love it. But my MS put the brakes on. The stress did get to be too much. I hate that he was right, but anyway, that's a whole nother story about him being right or not, but it was a lot of stress and it really started affecting me. I didn't, um, one day I couldn't differentiate between the brake, the brake and the gas pedal. And I knew that that was a problem. And that was the last day that I worked for someone else. I came home and it was certainly the best thing for my health. I mean, being able to do rest when I needed to and, you know, eat as I needed to and, and just take a day if I needed to, rather than. That's about having to ask for the day off. All those things were absolutely the best thing for my health, but I would say my paychecks quit coming in my bills. Didn't so, um, I needed to figure out how to do both how to accommodate my health, but generating income and. I really didn't know what the heck I was going to do. And I looked around and saw, I had started. Let's see. So I was diagnosed in 2008, in 2011. I started up a website called FUMS or FUMSnow.com and it's for people with MS to get an attitude, but also I was really just sharing my journey at that point, because when I, when I was diagnosed, there was, there were no patient advocacy sites. It was all just really bad news. So I wanted to share that there was a lot of life after diagnosis. So that was the whole point of FUMS. The point. Um, in 2015, I added a podcast over there. The FUMS podcast show. So now I've got, you know, an asset, I've got this blog and I've got, um, I do merch sales on there and I've got a podcast. I knew people made money doing that. I just had no idea how they did it. So I set about to try and. Find out how to make money online and how to make money with my blog and my podcast. And, um, it was not easy. I there's, there were a lot of trainings and a lot of coachings that were scams. I mean, I can't tell you how many scams and I got involved in them. Yes, I did. I spent a lot of time, energy and money going down bad paths, but somewhere along the lines, I did get it figured out. I found the real deal trainings. And I started to monetize that site. And at the same time, my podcast had been found by a vice-president of Healthline which is the largest, um, health information company. I think they call it social health now, on the internet. So they wanted me to do some podcasting for them, which I did. And then different uh, departments from that company found out that, you know, I could write and I could moderate I'd run company, um, communities. So I was hired to do various different things within the patient advocacy industry. I'm using my air quotes here because who knew, who knew there was such an industry, it wasn't talked about. I stumbled into it and I overheard somebody talking about how they got paid to share their story and articles. So I started doing that too. Pretty soon. I realized I was making more working for myself than I ever did working for someone else. And I was taking excellent care of myself. And when I realized that I knew I needed to share that. With others, the Mm. possibilities, you know, that exist that unless you are in that online world, you wouldn't even know this stuff exists. So, um, my membership community called Patients Getting Paid was born and with the simple notion that I want to bring people together all with chronic illness that are either looking to supplement their existing job, um, maybe make themselves feel a little less nervous about what if I lose this job, I need to have something else. Or full on my job's too stressful. I need to be able to work from anywhere and do what I want to do when I want to do it. So that's, that's what patients, when patients getting paid was. Born and, um, I launched it last September, so I guess we've been at it a little over six months now. Yeah. And it's, it's going very well. People are, are really, um, we have a great community and people are learning all the different opportunities, like quirky things too, like, you know, voiceover work and, um, oh, we had a trainer come in to do a workshop on, [00:10:00] um, uh, photo. Photo management photo and video management. So, and we had a member. Yeah. Right. It's so needed. And it was perfect for one of my members. She happened to be talking, I do at least twice a month. Um, it's called members only live coaching calls and oftentimes people just come in and go, I have no idea. I don't think I can do anything. I have nothing that I could do. And we'll start talking and I'll just pick at the. The surface a little bit and get down there a little bit and find out things they're interested in. This woman had said to me, well, I used to really enjoy scrapbooking. And I said, wait, what? I just put a new training in. You need to learn about this. And she went and did that training and started that business. It's really, really cool. So that's the whole point and it's support. And it's, I also list, um, condition specific gigs that are available every week inside there. So, you know, it's not just starting a business on your own. It's. Yeah. Finding ways to ask for accommodation at your own work. Um, and sh cause there's all these members with all this different experience and they're super supportive. So they'll come in and say, well, this is what I did. This is how I ask this is what happened when I did it. Um, and then all these, you know, subsequent workshops and trainings. And I like to think of it as kind of a catalog of possibilities. You know, what are some. Gigs or possibility job types of work environments that fit the criteria of patients getting paid, which is it. I can do it from anywhere. It is flexible and remote and it accommodates my illness and I get to get to work on my health rather than just work on work all the time and generates an income. [00:11:47] Meghan Beier, PhD (2): Oh, absolutely. I have so many follow-up questions and I really want to dig into a patient's getting paid because I think it's such a valuable resource. I have so many people that I've recommended come and, um, find your site because, uh, Uh, I, I hear that. So often people say, well, I don't know what I can do, or I can't do anything or I'm already on disability. And, you know, I'm afraid to give that up. And so it, it really is a valuable resource that I think many people will benefit from. Let me ask this question and then I want to go back to the beginning and sort of, um, understand a little bit about, um, kind of what symptoms were impacting your employment before you went into business for yourself. So what do you do with people who are on disability? Have you run into that already? If they're on disability and they want to do a side income, and they're worried about that impacting their disability. [00:12:41] Kathy Reagan Young: Yes. There is a program called, a ticket to work program. Now this is through SSDI, That is very clear cut in their criteria. And based on your specific circumstances, you can kind of run it through this. This information fill in some information, it'll tell you how much, in addition to your SSDI payments you can make monthly. So first of all, the good news is you can make an additional amount. That's based on each individual person. So I can't give you kind of a, you can make an additional 1200, some people can make an additional 1200, but it depends on your circumstances. So you can go to that ticket to work program. I think it's ticket to work .org, dot gov anyway. I can get you that and you can put it in your show notes, but, um, that's yeah, it's totally doable. And, um, in fact, encouraged, I think people feel like they, if they were going to do something on the side, they had to keep it on the down low or get paid under the table and that's just not true. They really encourage you to do so. I'm sure because. The purpose is so important to everyone and they want to encourage people to have purpose and to, and to be able to, um, take better care of themselves and making money is certainly part of that. [00:13:54] Meghan Beier, PhD (2): Absolutely. Um, I wanted to circle back around to the beginning and understand your reaction when your neurologist said, I really don't think you should go back to work. Because I have my own thoughts about that comment, but I just wanted to hear what your reaction was. [00:14:10] Kathy Reagan Young: Well, let me say that he didn't, he was not my neurologist for long in part because of that comment, because yeah, I understood even at that point, how important purpose was and is, and. I felt very tied to work as a, the purpose for me. Um, at that moment in my life, my purpose was I had decided to stay home with kids with every intention of going back to work. So this was like a, wait, what moments? Like, why, why would I not go back to work? So, uh, I was stunned by that comment, honestly, but I was stunned by so much. I mean, he also told me I shouldn't exercise. And there was no, I shouldn't worry about my diet. So yeah. There's lots of reasons that I [00:15:00] got rid of him pretty quickly, but, but it was, it was, um, heartbreaking to think it was bad enough to have just gotten this diagnosis, but then to think, and now my plans for going back to work and really feeling good about my career are dashed too, how is that even possible? And it's not necessary. So I'm glad that I found that out, but it was, yeah, it was pretty devastating to hear, you know, you're done. [00:15:27] Meghan Beier, PhD (2): I, I can't tell you how many times I've heard people tell me that they heard that. A physician that they worked with, that they should not go back to work or they should go to part-time and how much anxiety and stress that brought onto them. and so, and I think that, you know, as you discovered, there are so many options for people that they may not even be aware of, that they can maintain some form of employment, even full-time employment, um, with the right accommodations. So, um, how did your Ms. Symptoms impact your employment. When you went back, even before you got to the point of needing to leave? [00:16:03] Kathy Reagan Young: Yes. Well, I was so nervous. I was not going to disclose. My intention was not to disclose at least at first, because I didn't want to be limited in anyone's eyes. I didn't know what anybody understood about MS and the last thing I wanted was to start a new job and have them think, well, I'm not going to give that project to her because that might be too much. It might overwhelm her. So. And went in with the intention of not disclosing at all and letting them see what I was capable of before they determined that I was incapable of anything. Um, however, I had a, oh, I, I was doing marketing for a physical therapy company and we had a number of offices in the local area. And my, one of my neighbors whose son actually had MS, was at that PT. Um, one of the offices when I walked through there and she said to the director of that clinic, she has MS like my, like my son. And, um, is she here for treatment or whatever? It was just, you know, and the director came to me and told me that, uh, I just felt like, are you kidding me? I worked so hard not to say anything. I went around and talked to all the directors and, you know, the president of the company and just said, this is why I wasn't going to disclose. And I hope that you won't assume that I can't do anything I'm quite capable. And honestly, because I was that they were in the, um, medical, you know, field, I think they understood a little bit better, so they weren't quite as taken aback by that. And they just said, you know, let us know it was a great company. Let us know how we can support you, which was wonderful. Um, what I didn't understand was that there were workplace accommodations that I could have asked for. So I went from, you know, this I'm fine. I may have MS, but I'm fine. To the next thing they heard about my MS was I need to leave because I can't tell the difference between the gas and the brake and, and to his credit, my manager actually said, do you need to just take some time off? And honestly, I felt so guilty in that moment. I thought I can't leave this company without somebody just because I'm not well right now. And I didn't have enough experience with MS to know that this was likely going to, that this was likely a relapse and likely going to, um, get better and I could come back. So it was, I just didn't have the knowledge. I did not know about accommodation and I wish I had, I really wished that I had, because I loved that job and it would've given me something to go back to. I mean, I'm grateful for the life that I've created now, but, I wish there had been a resource or I wish I had known where to look to know about that. And the other thing about disability, I looked into disability too, and I had just taken eight years off to raise my kids. Well, disability looks at the last, I think it's 10 years maybe of employment. It's. It's most recent employment. And I was, you know, I'd like to make a big fat argument about how much I worked in those eight years to raise really productive, good citizens for this country, but okay. That's not, doesn't fall under the criteria for SSDI. So that was off the table too. So I was kind of freaking out. Yeah. Take my work for me. That's like taking my life. [00:19:39] Meghan Beier, PhD (2): Exactly. Yeah. You know, you brought up two really important points. The disclosure part, which I think is so important, uh, Joe Stuckey, who's the rehab counselor, a vocational counselor, who we interviewed for this episode as well, talked a lot about being cautious about disclosing your diagnosis because even well-meaning people can [00:20:00] be biased and you brought up the perfect example, right? Where somebody might. You know, I'm doing, I'm doing Kathy a favor by not giving her this project, but by not giving you that project, it doesn't allow you to advance, right. Or to, um, you know, if, if you, you know, are gonna make more money or get promoted. And so they might be thinking, they're doing you a favor, but in fact, holding you back even in a well-meaning way. Um, so I think it's such an important thing to consider and be cautious around and, and really think about that disclose. [00:20:33] Kathy Reagan Young: Yeah. A hundred percent. And I hear a lot of, more sort of nefarious, [00:20:39] Meghan Beier, PhD (2): Oh, yeah. Oh yeah. [00:20:40] Kathy Reagan Young: that happen at work to upon disclosure, which breaks my heart. But, you know, it's, it's a shame. We can't all just, you know, go forth and be our authentic selves, but there are, um, to your point, good meaning people that could, could. Sort of handicap your career. Um, and then there are some not good meaning people that might be looking for ways to get rid of you and, and that could be their ticket to make it happen. So I always tell everyone, unless there's a reason, I would just keep it to myself. [00:21:12] Meghan Beier, PhD (2): Yeah. Yeah. I can't tell you how many times where I've written an accommodation letter for somebody, and then the company comes back and tries to nitpick every piece of it. And really what they're trying to do is get rid of that person, which is [00:21:24] Kathy Reagan Young: can't do the job. [00:21:25] Meghan Beier, PhD (2): Right? Exactly. Yeah, [00:21:28] Kathy Reagan Young: Well, and in the U S too, you know, that's tied into healthcare. I mean, we are going to cost them more in their healthcare likely next year, because we've, we're, you know, increasing the, the payout to the MRIs and the increased, you know, Horribly expensive drugs and all of that. So, I mean, yeah, they're looking at the bottom line. So, um, it would behoove them not to have someone like us on the payroll. Sad, but true. [00:21:59] Meghan Beier, PhD (2): Very true. And you know, I also like that you brought up this idea of applying for disability, and I think that even applies for retirement, right? Some people, some women with MS, if they stayed home with their kids earlier in their career, and then they're looking at trying to retire, they may not be getting paid as much, or it might be even harder for them to retire because of that time away, which is challenging. It's [00:22:24] Kathy Reagan Young: Yeah, it's really awful. It's really awful. It is. And it's that sort of thing too, that, you know, we, we have conversations around this sort of thing inside PGP quite often, and something we just talked about. And in fact, I'm going to be interviewing, um, not for PGP for FUMS, but, um, a divorce attorney that specializes in helping people with chronic illness, because it's such a there's, there's so much more to it that you have to keep in mind, the potentials in the future. To your point about like your retirement could have been affected by having obviously having to leave work early, but also if you took a chunk of time out to raise kids, so there's a lot, you know, we, we chronics there's a lot to consider. [00:23:09] Meghan Beier, PhD (2): Oh, that's amazing. I, I need the name of that attorney, cause I know several people I think I could refer them to. So you know, you also brought up that idea of, or I'll just direct them to your course because, or your community. Cause I so useful. Um, You brought up the idea of a purpose and also kind of productivity and how important that was to your health. Can you say more about that? [00:23:33] Kathy Reagan Young: Yes, that is my mantra purpose and, um, yeah, feeling productive. So I think. Forget that you have a chronic illness. I think just across the board, waking up with a purpose and feeling like a productive human being. Does everyone well, I mean, the lack thereof can make anyone sick too. So, um, in particular, I think with a chronic illness, Having too much time on your hands is really a bad thing. I think that's true of anyone, but with a chronic illness that gives you the time to what if it, and think what if this and what if that, and dial it up in your head and things get big in your brain. And all of a sudden you have stress, panic attack, and now a relapsed. Better that you put your brain power in a different direction and so much the better if you are also generating an income, but even if you're not, um, you know, volunteer, work, that sort of thing. I'm all for all of that, but we all need to wake up in the morning to get us out of bed, have a purpose. Why am I even getting up? Uh, in particular, I have found now doing this with other people. I knew this was true of myself, but seeing other people go through PGP and sort of come out the other side, what I notice [00:25:00] is the, um, self-esteem, that's gained by that and the self-determination spills over into their mental and physical health. So. I really think this is like medicine. I really do. I think you do yourself all kinds of good by staking your claim somewhere and saying, I'm going to make this little piece of my world better by what I have to offer. And. You know, uh, I'm going to feel like I'm being productive and I'm going to generate an income, even if it's small, but it's something and I'm being, you know, it's such a value based society. If we, if you're not getting money for it, is it even worth anything? Of course it is. But we just feel more valued if we're actually being paid to do something. So if you can find the two together, you know, per well, the three purpose, um, productivity and a paycheck, I mean, it's the yeah. The three Ps that I think go together and really help you mentally and physically and make the world a better place. And, and I started to say that what I'm seeing too. I mean, there's all kinds of opportunities, lots of different ways to skin this cat, so to speak. But those folks who feel like they have a direct correlation on helping someone else do so much better, so much better. And I will say it feels a little bit selfish when you help somebody, to be honest, because it feels so good for you. So. You know, imagine finding a medicine that you knew you could count on would make you feel good. It would really help your health, both mental and physical. Wouldn't you just grab that medicine? Wouldn't you just beat down the FDA's doors to get that pass so you could get to it. Well, we found it right. It's productivity. It's it's all those things it's having purpose and it's and it's taking pride. There's another P there's a lot of Ps in the. [00:27:02] Meghan Beier, PhD (2): Oh yeah. [00:27:03] Kathy Reagan Young: And PGP. So that's, that's the best medicine I can suggest. And it's something everybody can partake in. Get your medicine. [00:27:11] Meghan Beier, PhD (2): Absolutely. Uh, yeah, for sure. Uh, you know, I had another question I was thinking about when you were sharing your journey of starting FUMS, as well as patients getting paid. You know, one of the things that I, that come up a lot in the therapy room when I'm working with somebody, is that fear of trying something new, Right. So the I've always been a nurse my whole life, where I've always been a teacher and this idea of trying something that's totally out of the box or different, the fear that that might fail or that I might need to retrain and the cognitive challenges, you know, how do you approach that with people? [00:27:46] Kathy Reagan Young: I tell them that I've been scared lots of times, and I get scared quite often on trying new things. But what I have learned is that doing it anyway is its own kind of, self-esteem booster. And as long as you don't quit, you don't fail. So just keep trying and pivot and reconnoiter and refigure. Okay. This didn't work, but like I told my kids, you either, you, you win some, you learn some, you don't really lose. Right. So try it. And then learn from it. Okay. That didn't work out, but what part did work? What did I like? What, why didn't it work? And then just adjust and the next run you take it. That same thing is going to be a lot easier and a lot better. You're going to be better informed of how to do it in a different manner. That is hopefully going to be the one, but, so what if it's not? Then you learn something from that one too. And that's the beauty of being surrounded with a community. I really went back and forth. I was just going to make patients getting paid, um, a course, but I'm so grateful that it fell the way that it did more about a membership community because everyone gets to know each other and they're so supportive of each other. We do a motivation Monday where we list everybody posts, what they're planning on doing that week. And then we do Finish it Fridays 'cause you know, having all these accountability partners, I mean, you are just the studies show. You are just much more likely to, once you've committed to do something in public, you're much more likely to complete it. So, um, we've we give that opportunity and people check in with each other. We have coworkings we have these members only, um, you know, live coaching calls and that sort of thing. So a lot of people are scared. And that's okay. In fact, I think that's, that's the sign of growth on it. Honestly, get too comfortable. Everything's the same. You're staying the same. You get a little fear. You get a little amped up about it. There's nothing wrong with that. As long as it's not completely anxiety inducing and, [00:30:00] you know, bringing on a relapse, but a little fear keeps you honest and keeps you pumped and, and, um, and keeps you trying and experimentation is the best way to figure out exactly. What's gonna work for you. And I think those of us with a chronic illness understand this with all the meds we have to try, try that one didn't work. I mean, it's, it's, uh, it's kind of a way of life for most of us. So let's figure out what it is that you enjoy and you. Are good at, and, and you could, um, bring yourself to and, and, and give yourself to, and be a part of and feel good about, and let's find a way to make that happen. It might not be the first try you make, but we'll look at that, try and figure out what didn't work about it, but equally important. What did work about it? And let's bring that forward on the next try. [00:30:52] Meghan Beier, PhD (2): Absolutely. I imagine that community also helps people problem solve the challenges that come up. [00:30:58] Kathy Reagan Young: Yes. We even, we even have a special space. I think it's called need feedback or want help. And you can post a question at any time and people, you know, post answers or, uh, some people might be writing for instance an article and they just, before they submit it, they want feedback and they post it in there and everybody takes a look and gives their feedback. And, yeah, it's, it's great. So you're not alone, you're not alone. I mean, back to the fear, that's part of the fear to being all alone in this journey and something you've never tried before. You've never done before. And you have a million questions now you've got a place for you. Post those questions and other people are going through the same thing with you. And I love that they are, I call it, I call us all chronic preneurs because we come into this speaking that language, right? It's the, it's the language of chronic illness. We get it. We understand. And that just makes an inherently easier to have a conversation without having to give a background story. They understand why you're saying I can't get out of bed today. Gotcha. Here's what I do on those days, you know? [00:32:04] Meghan Beier, PhD (2): exactly. Yeah. It's a very different community than your traditional entrepreneur who may be working ridiculous hours. Right? Like [00:32:11] Kathy Reagan Young: Yes. [00:32:11] Meghan Beier, PhD (2): do you manage those barriers in a productive and efficient way? [00:32:16] Kathy Reagan Young: That's exactly right. And we do spend a lot of time talking about, um, the hustle culture and how that's not us, and that can't be us. And our health has to come first. And what does that look like? How do you manage taking good care of yourself? And committing to a project, a job, a part-time job, a full-time, all of those facets, you know, we've got people in different positions, so we've got different answers based on, you know, where, and they been where you are and they are where you're trying to get to. So it's really helpful to have all these different people, um, in this community to, to, to be there, to help. [00:32:59] Meghan Beier, PhD (2): Great. That's so great. Now I wanted to ask one more question about your, uh, pre- patients getting paid job. Um, one of the thoughts, so one of our audiences is mental health providers or medical community providers. And do you think that there is anything that. A medical provider could have done talk to you about, or supported you with before you got to the point of needing to leave your job and start this. [00:33:28] Kathy Reagan Young: 100%. Yes. I wish someone would have said to me and I, why not a doctor? You know, there are work accommodations, there are these things called accommodations. there are other avenues that you could there. There's something, um, you might check with your employer about, private disability insurance. I didn't, I didn't know. That was a thing either. I mean, I just didn't know what I didn't know. And these are docs who are particularly my neurologist. Who's working with people who have these issues all the time. Surely they would have this at their fingertips, um, or should. Um, and I think bringing that up, you know, I think unfortunately, I have found in the, certainly in the MS community and I'm hearing in PGP through other chronics in their communities as well. That, um, a lot of folks in the medical community are not bringing things up. And I can tell you, a lot of us are not bringing things up either through embarrassment or just complete ignorance, lack of knowledge, like my case. I had no idea that existed, so I didn't know what to ask, but, um, had a doctor said to me, You know, before it gets that glad things are going well, but if it ever gets to be an issue, you know, there are things called work accommodations that you can ask for by law. Oh, really? Where do I find out about that? Well, here's, you know, here's a one-pager that I have printed out that has, I don't know, several URLs where you can go learn. So the, you know, the medical team doesn't [00:35:00] actually have to be well-versed on any of this, but just point me in a direction with a resource where I can learn more. Because without knowing that there are resources available, I don't, I didn't even know there were programs that could have helped me. I could have stayed working a lot longer, a lot longer. I just had no idea. [00:35:19] Meghan Beier, PhD (2): Absolutely. You know, most of the time when people get to me, um, at that point, cause usually they're referred for cognitive evaluation. And it's because they're almost going to lose their job. Right. So, uh, or, you know, oh, the person is stressed because they're almost going to lose their jobs. So go see the psychologist. And there are so many things I think could have been done. Years prior to that, Right. There's uh, there's something called the job accommodation network where they have free legal consults that you can call and say, this is my situation. What do I, what am I legally able to ask for? How do I ask for it in a way that protects me? You know, it's Yeah, [00:35:58] Kathy Reagan Young: that would be so helpful. And I just think anyone who comes into contact with chronics. It would be great if everybody had that information. And again, you don't need to know the program, just know of the program to share it with the patients so that we can go and do the digging on it and find out if that could be a helpful program for us. Because if you, yeah, back again, you don't know what you don't know, so you can't get the help that's available. [00:36:30] Meghan Beier, PhD (2): Exactly. So you had talked about making lots of pivots, right? Um, in your new career, what were some of the biggest challenges that you faced and how did you overcome them? [00:36:40] Kathy Reagan Young: Hm, so many. Let's see. So I am not a digital native and tech is really tough for me, period. Even if I didn't have lesions on my brain, this is just not something that comes naturally to me. So that's challenging. And then you add, excuse me, cog fog, and fatigue. Oh, that was the number one biggest, issue for me and CA and still continues to be an issue now. How I've learned to sort of mitigate that is when I learn something new. So let's just call it doing, um, you know, a podcast interview. There is some tech involved there. And what I did was when I was clear, I wrote down step by step. Exactly what I do exactly where I saved files. You know, exactly what button to push X literal everything. And if I'm able to, record myself doing something on line on the computer, I do that. And I have one place where I put all of those recordings because on those really cog foggy days, I can sit down at my computer and think, what is this box on my desk? I don't know what to do with this. I see I'm supposed to be recording something. I don't know how to, I just can't even think of how to start. But I know where that is. And I go and look and I look it up and I have it labeled very clearly, you know, like how to record a podcast. And it is literally that clear and, and how to enter in accounts receivable and all those sorts of things that can be so overwhelming if I am not clear-minded and I need to be right at that moment. I have put together my SOPs, you know, for every single step that I do. And, so anything new, I'm doing another step-by-step for sure. Just, you know, and honestly, I'll be really honest with you, this patient advocacy stuff, which ultimately this is, this is kind of an offshoot for patient advocacy. I did a lot of patient advocacy with FUMS, and now I'm doing more, just a different type. It is exhausting in that you can give and give and give, I think, what is it called? Compassion exhaustion. It's real and trying to give so much of yourself. And I think particularly I warned people, a lot of people come into PGP that are interested in getting into patient advocacy. And I did a workshop on that actually. All the different facets of that and what you can make doing it, blah, blah, blah. But something I was really blunt about is when you are a patient advocate for your, chronic illness, particularly if it is a progressive disease. And so you're talking to people on a daily basis who are in a bad way. Potentially you're looking at your future. That can be exhausting on a lot of levels, very mentally draining and really, anxiety producing. So I like to warn people of that and, and say, you know, you might want to fill your days with some other things other than just this. Get some breaks walk [00:40:00] away, but you can still feel so good about having helped people. So I think those two things, the tech and then the working with people who are, you know, further along in my disease state than I am. And the fact, I think too, for me personally, I am, I'm a solopreneur. I am a one-stop shop. So I'm doing all the, you know, estimated quarterly taxes and the accounts receivable and blah, blah, blah. I'm doing the content creation. I'm doing the podcast. I'm inside the community, answering questions, I'm doing the coaching calls. I'm doing the coworkings. It's just me. I'm doing the marketing. That's a lot of hats to wear and it's pretty exhausting. I would not suggest this, honestly, to most people with chronic illness, I've been really lucky and able to juggle it thus far. Um, but I can see a time coming quickly where I need to, I need to get some help because it's just it's too much. But the thing with, you know, the. Workshops in the different ideas that I post inside a PGP. They're not as all encompassing as this. Now, if that's what you want and you know, a chronic illness characterizes a lot of things. Okay. So I have multiple sclerosis, but it's also, you know, we've got folks with arthritis, we've got folks with migraine and different things like that, where they have some real good, solid time where they're, they're not bothered with whatever it is that they're, you know, challenged with. So, um, You know, it's, it's knowing what your challenges are and your potential issues down the road, and just figuring out what is going to work best for you and how to make it work with what you're dealing with and how to again, be productive and feel purpose, but take care of yourself. [00:41:53] Meghan Beier, PhD (2): Absolutely. Well, can you share, um, you know, I know this is going a little bit longer, so I hope that's okay. I just, I really appreciate everything you're doing. Can you share some of the jobs that people have found or are working on in patients getting paid? [00:42:06] Kathy Reagan Young: Sure. Well, I mentioned earlier that every Monday I put up a list it's usually around 15 or so condition specific. So. Do you have cancer? Do you have, you know, this type of cancer, multiple sclerosis, all these different migraine, and you can click on that and be taken. So that's, those are true gigs. So you can see if you qualify for that. And if you do, it says right on there, how much it pays. And they pay typically somewhere between like 110, and I've seen some up to $800 for a gig. And then there are. You know, as I said, these workshops that I do in there, that, that just point out different opportunities that you might be interested in, or folks come in and say, okay, I, I know that I I'm a teacher, I've been a teacher for years, but I just can't take that schedule anymore. And we talk about doing online courses for instance. And how do you learn how to do online courses? And, um, you know, we've got trainings in there about, do I need a website, you know, are I want it, I had someone come in and they. I didn't know what they could do and, you know, I've got nothing, I've got nothing to offer and this kind of thing. And, and just, chit-chat, I've found that she made these cute little Teddy bears [00:43:25] Meghan Beier, PhD (2): Hmm. [00:43:26] Kathy Reagan Young: and, we talked a little bit about that and she said, well, I have posted those and I do sell them now and again, but it's, you know, it's, it takes it's very time consuming to make one. So I can't make much money doing that. And I said, well, I get that. But what if you sold. What if you saw the training on how to make. And she's like, oh wait, wait, you know, wait, now we're talking one to many, you know, it was one to one that's not scalable, but one to many I'm training a bunch of people on how to make these bears. Yeah. And then, then later it was, why don't you add to that on how to sell these bears? Cause you were selling them on Etsy and you were saying, how do you what's the business of how to do that? So she did that. So there's these weird, quirky little things too, that you just, you don't even know that it's in there. That that might be a possible. An interest that you have, these member only live coaching calls are so great because that's exactly what we would like digging into your brain and going, well, what's your background? What do you like doing? What could you, and then, and then all these people are chiming in on. Well, you know, you could do this with that. And then also I'm constantly. On the internet, looking for job opportunities that really fit that criteria of being flexible and remote. And now people are starting, companies are starting to come to me and say specifically, Hey, this is what we're looking for. do you have anything? And I'll post that in there and send out an email. So it's PR it's providing this nice synergy. And so that was a long way [00:45:00] around to say it's so across. It's so bizarre. It's so across the board there, some people come in and they. You know, they'll come in thinking they want the content and they inevitably say for the community [00:45:10] Meghan Beier, PhD (2): Yeah. [00:45:10] Kathy Reagan Young: and, and they're like, you know, what, if I get a gig, a condition-specific gig every now and again, that more than pays for this. So, you know, that's great. Or some people just want to do surveys sometimes. Put up some surveys and you know, that takes 20 minutes or something and you make a hundred bucks. There's things like that. And other people have been there since the beginning and they're building their businesses. They're building their advocacies. There's, we've got somebody writing a book, somebody wanting to start a podcast. Uh, we had two people actually finish a book. You know, it's, it's, there's no, it's a one-stop shop for all kinds of stuff is probably the best way to put it. [00:45:47] Meghan Beier, PhD (2): Such a valuable resource. I can see so many people who would really benefit from not only that community, but all the trainings as well. So if people wanted to learn more about FUMS about you, about, patients getting paid, what are the, where are the places online they can find you? [00:46:05] Kathy Reagan Young: Yeah. So for FUMS, go to FUMSnow.com and that's the blog. That's the shop. That's the podcast. You can find that, that you can find both podcasts anywhere you download your podcast, too. And then for patients getting paid, it's real easy. It's PatientsGettingPaid.com. And that really explains what you get in the membership as well. And there's also a PA there's also a podcast for that. So, and that's really about, that one in particular is super inspirational because it's got patients who are getting paid. I interviewed them to hear their story. Okay. You were diagnosed and you lost your job. Could no longer do that. Then you did this thing. How did you do it and what, and what's your advice? So that's super inspirational and we also have experts on there, um, that do trainings as well. So check it out. [00:46:50] Meghan Beier, PhD (2): I love this interview. I feel like you have so much value to share in terms of your background, your experience, how you, maybe what you could have gotten in terms of accommodations, but also how you pivoted when you had to leave that job. And, and then the, the resource that's available to everyone out there, who has a chronic illness. So thank you again for everything that you shared. And I look forward to talking to you again in the future. [00:47:16] Kathy Reagan Young: Me too. Thanks so much. Appreciate it. Conclusion [00:47:18] Meghan Beier, PhD (2): I hope you enjoyed that interview with Kathy Reagan Young and got some valuable feedback to share with your patients about how they might consider retraining or rethinking their career to adapt to MS symptoms, please be on the lookout for part two next week, again, with Joe Stuckey, M.S., C.R.C., and we'll be talking about accommodations and workplace disclosure. If you would like continuing education credits for listening to this episode, go to: findempathy.com/learn. Our goal is to help people living with challenging medical conditions find the mental health providers who understand their diagnosis. Our education, and this podcast, is focused on increasing the number of mental health providers who can help. If you are a psychologist or a mental health provider that specializes in health populations, please consider signing up on the free Find Empathy directory. Go to findempathy.com and select "Get Listed." We would love to connect with you on social media. Look for us on Facebook, LinkedIn, Twitter, and Instagram. If you have suggestions for topics you would like covered by this podcast, let us know. Our email is [email protected]. Finally, please know that the opinions expressed by the experts today are their own. We are not financially supported by any of the businesses or resources described in today's podcast. Also remember that the content provided today is for educational purposes only. Please seek the guidance of your doctor or mental health provider for any questions you might have regarding your own health or medical condition. Thank you so much for listening and we look forward to you joining us in the next episode.