Rare Disease Fatigue is Real – Ep. 23
In this episode, I open up about rare disease fatigue—physical exhaustion from treatment, the emotional weight of constant advocacy, and the endless admin grind of managing care. I share what triggers burnout, how I cope through energy management, creativity, and support, and why hitting a wall isn’t failure—it’s a signal to rest and rebuild.
Rare Disease Fatigue is Real – Ep. – 23 – The Fine, But Not Fine Podcast
Transcript
You look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease health care battles and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoides since 2015. This is a space for real talk, real experiences and practical advice. Because surviving is one thing, but figuring out how to actually live, that’s the hard part.
Today’s episode is for anyone who has ever thought — I am not just tired, I am tired of being tired. Rare Disease fatigue is real, and it’s not just about being sleepy or needing an occasional nap. It is the exhaustion that comes from treatments, constant appointments, insurance fights, side effects, and the emotional weight of carrying an illness that never takes a day off. So today I want to talk about what this kind of burnout looks like, why it happens, and most importantly, how we can cope with it.
So what rare disease fatigue really means is, when I say fatigue, I don’t mean the kind that a good night’s sleep will fix. Rare disease really shows up in three ways for me and it might for you too.
First, there’s the physical. So treatments, it could be, right now I’m on Pegasus, Interferon. It could be a topical or oral chemotherapy, or even medications that are kind of simple on paper, the whole thing can just be draining, right? And then you add in any itching or pain or insomnia or clothes sticking to the topical, whatever it may be, and suddenly sleep is no longer restorative, so you’re waking up already behind.
And second, there’s emotional fatigue. So think about how many times you’ve had to explain your condition, whatever it is, right to family, to friends, to coworkers, even to doctors who should probably already know. Or maybe you have a physician assistant or nurse practitioner who may not have covered this in their training. Think about the mental load of advocating for yourself every single day, I’m telling you all that can wear you right out.
And third, there’s administrative fatigue, and it’s the never ending calls, scheduling appointments, tracking refills, dealing with specialty pharmacies. Today I had a call from my specialty pharmacy, says, oh boy, we’re out of your medication. You know? What do you do then? Because they don’t exactly give you much of a supply, right?
So it really can feel like you’re managing a small business, except the business isn’t making you any money. It’s costing you a lot of money. It’s your health and your body. So burnout isn’t just a mental state. It’s the crash that comes when your body and your mind and your spirit have really just been running on fumes for way too long.
So why does burnout hit us so hard in the rare disease or chronic illness community? And I’m going to name some of these triggers, I think calling them out really helps us to see them more clearly.
Uncertainty, right? Every treatment is a question mark. Will it work? If it does work for how long? What will happen when it doesn’t work? Or what if it works? What happens after that? So that constant guessing game takes energy, and it’s really hard to ignore uncertainty.
We also have a loss of normalcy. You want to plan a vacation or, heck, even just dinner out with some friends, your disease doesn’t care. That sense of unpredictability that chips away at your joy, that loss of normalcy to be able to just go do something because you want to go do something right?
There’s also isolation, even when you are surrounded by people who love you, there still can be a little bit of that feeling that they don’t really get it, and sometimes they don’t. Compassion Fatigue is real for us and for those who care about us.
And there are the health care battles I talk about, you know, spiking your blood pressure, right? Prior authorization, or maybe you’re having to repeat your medical history for you know, the umpteenth time. It can just be exhausting to have to advocate for your care when you’re already not obviously in peak condition.
And don’t even get me into the surveys that the healthcare provider send out saying — do you think you have great health or not? You know, it’s like I have cancer. How can I ever answer this? Right?
There’s also identity conflict, right? I’m you want to be seen as capable, strong, professional, right? But your body can force you into rest, into slower pacing, into limitations you didn’t ask for. And that disconnect, that can hurt a little bit, it stings sometimes, right? So how do we cope? Because there are ways to manage it, right?
So you’ve got to think of energy like a budget. You cannot overspend your bank account without consequences. So why overspend your energy? Right? Build rest into your schedule so you can avoid crashing. You know, I plan downtime on my calendar, just like I do doctor’s appointments. It’s not optional. It’s necessary.
And outsource where you can, I know you can’t do everything. You can do grocery deliveries. I actually do a lot of grocery pickup, where I place my order online and just drive up to the little driveway, load up my car and go. Using online bill pay. If you don’t already have a separate account that you transfer money into every month and pay your bills out of that central account and just have them automatically pay. And that is something that you don’t have to do. And by putting it into a separate account that you transfer money into, it’s not like someone could put an erroneous bill in there and suck everything away, right?
And, you know, give yourself credit for the little wins, right? Did you get laundry done? I mean, that’s a win. If dinner was reheated leftovers, that’s still a win. Seriously, leftovers are gold. That’s most of what we eat every week. And keep in mind that the goal should not be perfection. The goal is survival. The goal is sanity. The goal is having a decent living experience while you’re having to deal with the crummy parts of having a chronic or rare disease.
Now for mental and emotional supports. Therapy and support groups can be huge lifelines, whether it’s a professional counselor who understands chronic illness or maybe even an online rare disease group that understands your world. You don’t have to carry this alone. There’s a place where you can connect with people, vent or share challenges and get you know, support and help.
You also need to normalize saying, No. This is something I learned a very, very long time ago. You don’t need to explain, and you absolutely don’t need to apologize. “I can’t” is a complete sentence, right? Protecting Your energy is an act of self preservation, not selfishness. And you need to think about how and where to apply this. I am that person that if you ring my doorbell and I am in my no territory, I do not open my door for you. I don’t, I don’t have to. That door was installed for my convenience, not somebody else’s. Same with the phone. Just because it rings doesn’t mean you answer it. Live in the now, don’t do the things that you don’t have the energy to do.
And honestly, don’t underestimate the power of creativity, right? For me, obviously, I do this podcast, but I’m a quilter, right? That’s a way for me to process some stress, process some fatigue. It allows me to have some fun. For you, it might be journaling, painting, gardening, it might be car racing, I don’t know, but find something that restores you.
There’s also the care of the physical body. Movement helps, even when it feels counterintuitive, simple, short walk, stretching, maybe yoga or pilates. It can actually boost energy instead of draining in and here’s the thing, go to the gym even when you don’t want to. That works for me so often and even, like right now, I’ve recently recovered from having a rough go of Covid, and I’m still dealing with some of the after effects of it, but going to the gym, I’m tired. I mean, I mean, I’ve got other things I want to do, but I know I’m going to feel better for going to the gym. So I’m going to go to the gym.
Nutrition and hydration not going to cure your disease, but it can make a difference in how you cope day to day. Eat garbage. Might work for a minute, but you’re probably going to feel like garbage later. Eat well, drink water, have a cup of tea, drink a coffee, whatever it is.
And you know, they call it sleep hygiene, right? Make bedtime a ritual, shut off, the screens dim, the lights give your body a chance to rest. You know, some people will even take an evening bath or an evening shower, and you know that really helps them kind of relax and get ready for that point of taking on sleep. It’s restorative.
So here’s a part I really, really want you to hear. Burnout is not a weakness. It is not a personal failure. It’s a signal. It is your body saying, Stop, I’ve hit the wall. You are not lazy for needing to rest. You are not falling behind because you have to say, No, you are protecting the only body you have, and that’s really important.
So instead of beating yourself up for being tired, reframe it. Tell yourself I’m not stuck in bed. I’m recharging. I’m not falling apart, I’m rebuilding. Now that shift doesn’t erase the fatigue, but it can ease the shame that sometimes people put on themselves because of it. Rare disease or chronic illness, fatigue is real, but with pacing, support, and really some self compassion, you can keep moving forward, even if it’s a little bit slower than what you want. And for me, I’ve learned that when I stop pretending, I can power through, I actually can go further. My body might slow me down, but it has not stopped me yet.
Thanks for listening to Fine, But Not Fine. If this episode resonated with you, subscribe so you don’t miss what’s next. And if you’ve got a story, question, or just need to vent, reach out. I’d love to hear from you. Until next time, take care and keep on going.