When Life Breaks the Plan: Choosing Yourself Through Chronic Illness

What happens when everything you’ve built—your career, your independence, your identity—starts to unravel at the hands of an illness you didn’t see coming?

In this powerful episode, I’m joined by Cathy Beederman, former tech exec turned reluctant expert in resilience, who shares what it’s like to face life with ME/CFS (Myalgic Encephalomyelitis, also known as chronic fatigue syndrome). From navigating devastating diagnoses to redefining self-care in the smallest of rituals (hello, “coffee report”), Cathy brings raw honesty, sharp humor, and the kind of perspective that only comes from living a radically altered life.

This is not an episode about giving up.
 It’s about choosing yourself again and again—even when the world doesn’t understand what you’re going through.

We talk about:

• The silent grief of losing your “before self”
• How to stay connected when your body can’t keep up
• Reclaiming visibility and voice through storytelling
• Why asking for help is a strength, not a failure

If you’ve ever had to rebuild from the rubble—or are supporting someone who is—this conversation will stay with you.

📍Cathy’s podcast: That Chronic Thing: https://podcasts.apple.com/us/podcast/chronic-illness-support-that-chronic-thing/id1665287658https://open.spotify.com/show/5W4rhZD1SvRM7jp1sGDqvz

📲 Follow her on Instagram: https://www.instagram.com/indoorcathy/

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Transcript

Host: It is pretty easy to take your health for granted. I know I have, but as we get older, we become a little bit more aware of the importance of our health and perhaps it's fragility. And today my guest is Cathy Beederman, and she's sharing her journey and story with us today about very unexpected health challenges that came her way and changed her life quite dramatically.

And how [00:01:00] she's choosing herself and finding her way on a very different path to what she expected. Enjoy this inspiring conversation. Hi Cathy. Thank you so much for being on the podcast. I'm so happy to have you here. How are you doing today? 

Cathy: Hi. Thank you for having me. I am doing okay today. Doing okay?

Host:Good.

I'm really interested in speaking with you and you sharing your, your journey with listeners. So just for the folks listening, a little bit of background and then Kathy, you can expand on this and please do. Cathy, you used to work for maybe the biggest company in the world for a very long time and had an amazing career there, very successful.

And then things began [00:02:00] to change with your health, and you began to notice that something wasn't quite right. Can you tell us a little bit about that? Now you have two diagnoses and life has changed quite a bit for you from those days of being busy corporate gal and living the life that so many people dream of living and define as success.

Can you tell us your story in your own words about that change and, and what happened? 

Cathy: Yeah, absolutely. I used to work in corporate technology and I worked for 17 years with my former employer. And it was probably the highlight of my life because I really loved what I was doing, which I know is[00:03:00] a rarity for someone to love going to work and to feel so good about it. 

And so it was pretty devastating to me when in 2019 I just suddenly started feeling pretty awful. And I have a specific memory that I think I talk about in one of my podcast episodes where I was holding my lunch as I walked back from a cafe, and the lunch was too heavy in my arms and I was like, I know this shouldn't be too heavy for me to hold.

And so I started having very odd symptoms. And it kind of set off a journey of seeing many doctors and they couldn't diagnose me. But a year later I did have one diagnosis. Two years later I had two diagnoses. And so I have the primary problem in my life which is called Myalgic Encephalomyelitis. [00:04:00] M-E-C-F-S also known as chronic fatigue syndrome, and it is a very serious disease that has very simple name.

Mm it has been just ruined in my life. Uh, you gotta laugh sometimes. And it has caused me to say goodbye to that job I loved and kind of turned my world upside down. So I have just kind of been like that emoji where it's like a smiley face, but turned upside down. You don't, I don't really know how to live my life and what to do because I'm coping with symptoms 24 7.

Host: It's just a really hard life. So it's a huge, it's a huge change and I don't think many people will easily grasp what a sort of seismic shift it was for you from going from being fully independent, you [00:05:00] know, living, living your best life. And as you say, you know, loving it, loving, working in a job where you felt appreciated and you were able to express your expertise and grow and all.

And you were very well paid. The change that these diagnoses brought is that today your symptoms all the time and you're, I mean, you're maybe people, I'll show maybe a short clip of our, um, of the podcast where people may see an image of you, but you're sitting with cushions around you in your house.

What does a day look like now, Cathy? As regards how you're looking after yourself and the challenges that you're facing through a day. 

Cathy: So I do not sleep well and when I wake up it is what the doctors call non-restorative sleep. So I wake up and I don't [00:06:00] feel refreshed. Um, but my routine in the morning is pretty much the only routine I have during the day where I would, you know, take my medicine and take care of my animals.

I have three animals. I have a dog and two cats, and that is a lot of work for me because, uh, they, they just cause a lot of work and it used to be nothing for me when I was healthy. And now I just have a lot of tasks associated with them that I never gave any thought to before. 

So making my coffee is kind of like a meter for me, like I have to get the little cured cup up and I have to get the water and everything. And sometimes my arms are so heavy and my cognitive processing is so slow that making coffee, I [00:07:00] know the rest of the day is gonna be rough. And sometimes making coffee feels like no big deal. And so I often talk to my mom on the phone at that time of the day and I tell her kind of the coffee report. I don't call it that, but I should because it's, it's just, you know, how hard is it to make coffee? My arms are heavy often, and it just kind of is a forecast for how the day is gonna go. 

Then I like to lay down on the couch and get fully supported. I often forget that. Laying on the couch with this many cushions around me is not normal until like a friend will comment on it.

But I'm laying on the couch with two pillows underneath my knees and multiple behind my back, one behind my neck, one off to the side to support my arm, and this is what I need [00:08:00] to feel like comfortable and supported. But I'll put my laptop on my lap and I'll go on Instagram or I'll work on my podcast.

This is what I need to be comfortable, but I still have some cognitive power that I can use for a couple hours. I'm pretty much good till like noon, or maybe 2:00 PM and then I am done for the day. I have, pretty much nothing to give. After 2:00 PM I could socialize with a friend if a friend comes over, but what happens at 2:00 PM is I just start to deteriorate and I consume a lot of cannabis, and that will definitely mean that I can't get a lot done.

But that is what is needed for surviving my symptoms. And sometimes I have to consume earlier in the day, depending upon my coffee [00:09:00] report, which I've newly branded. If I'm in a lot of pain when I'm making coffee, sometimes I have to, go partake earlier in the day. But hopefully I can make it usually till the afternoon time before I smoke.

Host: So I've heard a lot, and I think people find it very difficult to understand that level of fatigue and pain and discomfort and symptoms, and this idea of non-restorative sleep that you've been asleep, but there's a whole other different type of sleep. If you have the illness that you have, which is you wake up and you're like, I'm not refreshed.

That didn't do for me what sleep used to do for me. And so you're always coping with this. It's not even a sleep deficit, it's just you don't get restorative sleep. 

It’s a bit like the sleep deficit though, because [00:10:00] I feel like the resulting brain fog is similar to someone who doesn't sleep a lot. I saw a meme recently where people were talking about things they've done with brain fog, like getting into a bathtub with their socks on, or putting something in the fridge that belongs in the microwave, or you know, doing things that don't make sense. And that comes from not getting adequate sleep sometimes, but in our case it just comes from poor cognition, that is a result of bad sleep, bad quality sleep. So it kind of aligns in a way with someone who maybe has a newborn baby. 

What is the prognosis then for you when you're thinking about this, is you have your coffee report in the morning, it's gonna be a better [00:11:00] day. It's going to be not such a good day.

That metric or that kind of check-in for the coffee seems to be a good indicator of what your energy level is going to be like for the day. But give, give listeners, um, a view of like maybe when was the last time you went out for a walk? Or can you go out to a restaurant if somebody drives you there and back and have lunch with a friend?

How, just how much has your life sort of contracted and changed with the diagnosis? 

Cathy: Yeah, sure. Well, I can't go for a walk, unfortunately. I lost that ability a couple of years ago, so I started with a cane. Then I went to something called a rollator, which is like a walker that has wheels. But I very quickly found myself winded, and I get this [00:12:00] overwhelming malaise feeling, and I just needed a wheelchair.

So if I leave the house, I'm in a wheelchair, but I need help to leave the house because I need someone to push my wheelchair. If I use my power wheelchair, I need someone to help get the power wheelchair to wherever I'm going. I'm completely dependent on others. Now, if I'm going to a restaurant that has minimal walking, that is my favorite because that means I can use my cane and walk and it makes me feel like a person again, like I used to be. And my friends and I go to this restaurant that's nearby and they will drop me off, um, and go park and I take my cane and I go sit out and it has this beautiful outside patio with heat lamps, you know, for winter.

I am in California, so it  [00:13:00] helps. I'm not sitting in the Midwest, with snow or anything, and it’s great. But sitting in a chair is really hard on me, socializing. It takes energy and so afterwards, I am done for the day. I have such a great time and it fuels me, um, as far as connection, but it takes a lot of energy.

Host: Yeah and you point out there, connection being so important, socializing takes energy, but connection is really important. And how are caring for yourself in that way, in keeping connected to people. Obviously it's lovely to go out on occasions with good friends, but I'm imagining that that isn't done very regularly, but to keep you connected and to, [00:14:00] have those nourishing relationships, where are you finding that in a way that you can manage energetically?

Cathy: I am very lucky that I have some good friends who continue to come to me at my house because going somewhere is very hard. So that restaurant that I just told you about that is maybe one to two times a month. During the week when I need that nourishment, I'm lucky. I have friends who do come to me a couple times a week.

Um, and then I also find an awful lot of connection through Instagram, and those are often newer friends that I can connect with and find support. Through on my actual conditions or on other chronic illnesses where we have similar needs and experiences. So we don't [00:15:00] necessarily have the same diagnosis, but we know what it feels like to become isolated.

For example, at this past holiday season, we all know what it feels like to miss out on festivities and at nighttime, I really would love to go to Christmas in the park, but my body just shuts down as soon as the sun sets and I can't go to any nighttime light festivities. And other people know what that's like. So we connect a lot over things like that. 

Host: And when you think about caring for yourself, obviously there's the physical caring for yourself. How do you care? What are your some of your important. Self-care rituals, and I mean that in, in a very humble way because ritual sounds like it could be very extravagant, but I believe that one of my important self-care rituals is that cup of coffee in the morning and just [00:16:00] having, having that, but what ways do you care for yourself now that feel really important and nourishing to you? However humble. 

Cathy: It's such a great question because to be honest, I'm really struggling right now with that because I'm becoming more and more dependent on others. I can make my cup of coffee, but I can't do a lot of other things. I love getting a manicure and having these like really nice nails fuels me, like looking at my hands and it will make me feel really good about myself. It kind of reminds me of who I used to be. And I can go to a salon that's a couple blocks from my house, I have to drive there. But, um, it's short enough distance that I can drive without, you know, uh, having any [00:17:00] issues

And so that is one of the things I'll do. But really, besides that I struggle to find things that make me feel like myself and, and feel good. I'm incredibly passionate about animal rescue. And I used to volunteer a lot. I used to foster in my home. And it kills me that I can't do that anymore because I have trouble taking care of myself, let alone you know, my babies. And then an animal that needs additional care -I can't do it. 

Host: So there's a lot of things that are actually, you know, strikes against self care right now. And I think you've spoken to this really in the way that you've described that is that. [00:18:00] coming into this sort of an acceptance of how deep and how dramatic the change has been is a struggle in and of itself.

You know that, you know, you talk about the nails reminding you of your old self and then being with your new self and kind of accepting quite a dramatic change in that life for yourself. But I know that from seeing you online on Instagram and the work that you are doing through your own podcast is going, is serving, helping other people.

Can you tell us a little bit about your vision for your motivation for starting the podcast and what you're gonna bring into the world?

Cathy: You know, the podcast is funny. My cousin encouraged me to start [00:19:00] it after having watched me on Instagram for a while. She said that I would be really good at podcasting, and so when I started it, my goal was to share my story, but also other stories, and I've always been very casual about it and knew that it would be a place where others could relate and connect to it, but it would not necessarily be a great resource for information. And I'm glad I had that expectation because sometimes I share facts that are wrong. And then in my show notes, I have to go, whoops, I was wrong. So the good news guys is I fact check myself afterwards.

But yeah, in the moment, sometimes I say things that are wrong. I mean, it's hard when you're dealing with these really complex diseases, to remember the research correctly. But there's so many of [00:20:00] us that are feeling isolated and alienated from others, and we need that sense of community. And so I really would love to foster community in that way by having the podcast.

And I happen to know some people who are family members of those who are sick, listen as well. And those people are really caregivers. Um, and I've gotten some really lovely feedback from them even though they're not my target audience. And so that feels really nice as well. I think that's beautiful.

Host: And when you say they're not your target audience, I think probably people who aren't the actual sufferer would benefit a huge amount from listening to your podcast. Um, I have. I know somebody quite close to me who has a [00:21:00] diagnosis of chronic fatigue, and I think they have really struggled to have it understood by other people.

And I'd be interested in your thoughts on this, Cathy, because this person found people weren't interested. They were dismissive, you know, oh, you're tired, you know, pull yourself together. Um, we're all tired, we're all stressed. I didn't really understand what they were going through until I had a very sort of intimate conversation with them where they really became very vulnerable and got into the detail of just what it feels like. That kind of lack of restorative sleep, that kind of sort of waking up in the morning and just hoping, am I going to, is it going to be gone today? It's very misunderstood. These conditions, even [00:22:00] for the people who are suffering them in a way, you're suffering, but it is very misunderstood.

So for me, as somebody who knows, who knows somebody quite well, who has it? Podcasts will bring for other people, is just like, oh, I never realized, or I didn't understand exactly. I just, because I wonder whether, as well, Cathy, you put on a good face or you find that some of your listeners or some of the people you connect with feel that they have to put on a good face for other people.

What are your thoughts around that? 

Cathay: Well first thank you, um, for saying that it. It could bring that, um, that is my hope. I think we all kind of put on a good face a lot of the time. But I will admit on Instagram yesterday, I shared a picture of me crying, which is an anomaly. I don't do that too often.

And that is [00:23:00] Instagram. That's not my podcast, but they're very much connected and in the picture of crying, I think I said something along the lines of, I'm having trouble with accepting that I need more help every day. And then I had like a vulnerability hangover, within a couple hours being like, I can't believe I shared that and I was gonna take it down.

But then I realized I had a lot of people commenting or messaging me saying, I feel this way too. And you know, it's important that I put myself out there so that others are seen, and, but every once in a while I have to remind myself that I get to be seen too, because I feel like I, like [00:24:00] 90% of me is like focusing on making others comfortable sometimes. 

And so I ended up putting another note up saying, you know, I'm aware that putting myself out there in such a vulnerable way may seem really odd to people, but when I do this, I'm connecting with people who really need it. I don't know. I worded it better yesterday, I swear.

But you know. People who put themselves out there in such vulnerable states, they don't do it for fun. They do it to connect with others who really have no place to go other than Instagram. Like our community of people who are home bound. We're only on Instagram and uh, that's how we reach each other.

Host: Yeah, I, I. I think it's [00:25:00] so important to have, have that connection and to have that honesty. And I think so many people struggle with asking for help. Like there's a whole lot of people who will just, oh, I, I don't wanna bother anybody, or I want to, I want people to think that I'm better than I want to look like I can do all the things.

Beyond having a, you know, a real kind of physical need and an illness, it's a struggle for people. So I think, I don't know, when you were, Younger Cathy, when you were at the peak of your powers in your career, whether you were somebody who found it easy or difficult to ask for help, that I'd be interested to know the answer to that, but I know that many people, even at the best of times, find it difficult to ask for help.

And so when somebody [00:26:00] does. And they become vulnerable and they do that. It's almost like you're issuing a permission slip for other people who are struggling and, and need to make the ask. Yeah. So I, I think you did a great service through that. 

Cathy: When I was younger and at my peak competency, let's say, like working and being super successful, um, I loved asking for help because I loved learning new things, and I loved showing others that there's always room to grow. And I also loved acknowledging mistakes too, because I wanted to demonstrate that I'm far from perfect and I have a lot of humility. Um, I like the way I'm saying it now. I'm not sure that shows much humility, but I wanted to always show that there was room for growth.

Now I am [00:27:00] forced to do it. There's a little bit of a difference, you know, then it was choice how I acted, and now it's a bit of desperation. But the reason I was, you know, so upset yesterday is because I just need help. Like, sometimes I need my water bottle refilled and like the effort to get off the couch and go refill it is too much.

So I'll just go without the water. I'll eventually get up and do it, but I may wait an hour. And so there's a lot of vulnerability in that, whether you want it or not. And it's also sort of that coming to terms that I can't get up and get my water when I need it, and water is life and I'm here and I have to manage my energy to decide when I'm gonna be able to do that simple task, which is such a huge change. 

Host: When [00:28:00] you think about where you are now and your younger self, who you know is vibrant, full of life and energy, do you think that there is a message that she could give to you today that would be of help or service to you, or that could have helped prepare you for the challenge that you're facing?

Cathy: I think she would remind me that she's full of passion and that she's cute and that she could be a badass at times. But yeah, she's just full of passion for all sorts of things. But she had the energy to like do too much and possibly, that's one of the things that really pushed my illness into high gear, but you know, at least she [00:29:00] lived quite a bit.

She got a lot done. I'm not sure if that's the type of message you were looking for. 

Host: The message was for you. I would think my message for you and you can receive it or not, but I will just offer this message to you very humbly. Is that you are magnificent, magnificent, and valuable, and full of so much beautiful energy in your heart.

That is a gift to everybody who listens to you. Who connects with you through your Instagram and through your podcast, and that you are nourishing people who you may never meet, [00:30:00] who will hear your voice and your story, and will be uplifted and will gain understanding. And will be more compassionate towards themselves or other people who are in their environment, who are struggling with a chronic debilitating illness.

And I think that is pure light, that kind of gift. 

Cathy: That's so beautiful. Thank you so much. 

Host: You're welcome. Can you tell people about your podcast? First of all, I wanna tell people I love the way Cathy does her podcast. Because Kathy may not be dropping, you know, these rigidly and the, you know, the episode comes out every whatever weekday at this time because you listen to your own needs and you're not necessarily doing that.

You're dropping episodes regularly, but in sync with your own needs. But [00:31:00] tell people about the, the name of the podcast. I'll put it in the show notes too. 

Cathy: Thank you. My podcast is called That Chronic Thing, and  I try to get episodes out on Wednesdays. But like you were saying, I often miss a Wednesday here and there just because my illness does not allow me to keep up the cadence that I would like to.

My goal is to have solo episodes and guest episodes, and some of my guests have accounts on Instagram and their own podcasts and they're out in the world, um, making a public face for themselves. And I have some that do not want that and are more anonymous but are happy to share their story. And they're just friends of mine and I think I'm really [00:32:00] lucky to have them contributing as well 'cause we need those stories.

And so that will be one of my upcoming episodes. My goal is to share different chronic things. We have so many different chronic illnesses, but like I was saying, there's a lot of themes that are consistent across the experience and that is how I became friends with people who have illnesses that are so diverse and different than mine. We often say, wait, what do you have? What's going on in your life? What kind of tests did you have? Because we forget, but we all experience the same type of isolation or being home bound or knowing what it's like to deal with doctors and gaslighting or just, um, ableism.

Those are common themes in the episodes. And then in my solo [00:33:00] episodes, I often tell exactly what's going on in my life because my little life episodes, they're just saturated with chronic illness. That's one of my problems is that I just can't escape it no matter how hard I try. So by sharing those little life episodes, I am able to demonstrate how being sick really has changed my life and may change the life of someone, you know. 

Host: And tell me where you are on Instagram. Your Instagram handle. Oh, my Instagram handle is indoor. @indoorcathy Yeah, it's for a second. Forgot how to spell my name. And, uh, it's not the same as my, my podcast.

I do have a separate account from my podcast. I just don't update it as often. [00:34:00] 

Host: Indoor, Kathy, for the main Instagram, that's where you're most active and putting your stories up and “That Chronic Thing ”for the podcast. So thank you so much. Thank you so much for giving me and us your energy today. I'm deeply grateful for that.

Cathy: Thank you so much for having me. I truly appreciate it and I appreciate your super kind words. They've really made my day. 

Host: You're so welcome. Wonderful for me. Thank you.