Most hard things come with a finish line — six rounds, twelve weeks, “get through this and you’re on the other side.” I don’t get that sentence. My treatment doesn’t end; it just continues, for as long as my body needs it. This episode is about treatment fatigue — not the kind where one appointment is brutal, but the kind where the hard part is the forever of it. And how I’ve learned to carry that without letting it stop me.

Treatment Fatigue: Doing the Hard Thing Forever With No Finish Line – Ep. 34 – The Fine, But Not Fine Podcast

Most hard things come with a finish line — six rounds, twelve weeks, "get through this and you're on the other side." I don't get that sentence. My treatment doesn't end; it just continues, for as long as my body needs it. This episode is about treatment fatigue, not the kind where one appointment is brutal, but the kind where the hard part is the forever of it. And how I've learned to carry that without letting it stop me.

1. Treatment Fatigue: Doing the Hard Thing Forever With No Finish Line – Ep. 34 08:30
2. High Liver Enzymes on Interferon: Why I Had to Stop Treatment – Ep. 33 13:25
3. 150 Appointments: What Rare Disease Treatment Actually Costs – Ep. 32 10:01
4. Two Days in the Halls of Power – Ep. 31 20:41
5. Inside Rare Disease Week: Taking Advocacy to Capitol Hill (Part 2), Ep. 30 08:06

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, healthcare 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.

Most hard things come with a finish line. You train for the marathon, and then you run it, and you’re done. You grind through a college semester, and then you graduate. And even a lot of the hard medical stuff has an end, maybe six rounds, 12 weeks, get through this, and you’re on the other side. And that finish line is [00:01:00] really how people mentally survive difficult things.

You can white-knuckle almost anything if you can see where it stops. So what happens when there isn’t a finish line? That’s today. It’s not a treatment that’s hard. It’s a treatment that may be forever or a treatment before the next treatment, before the next treatment that just goes on forever. Treatment fatigue, the specific exhaustion of doing a hard thing with no real finish line in sight.

So let me be precise about this because it is really easy to get wrong. Treatment fatigue is not, “This treatment is brutal.” Take my light box, narrowband UVB, two, three times a week, depending on where I’m doing it and when I’m doing it. Any single session, not a big deal. It’s minutes. I’ve done it hundreds of times.

If you told me, “Do this every day for one month and you’re cured,” I’d do it standing on my head [00:02:00] because there would be a finish line, and that’s the whole thing. It’s not the session that wears you down. It’s the Tuesday and the Thursday and the Saturday and the next Tuesday. It is not the weight of one appointment.

It is the weight of forever. Treatment fatigue is not about how hard the thing is. It’s about how long the thing goes, and mine goes as long as my body needs it to, which means there’s no date on the calendar where this ends. There’s just the next appointment and the appointment after that and the drive and the schedule and the rearranging of a whole life around a machine or a treatment with no box at the end to check.

And here’s something I’ve noticed. There’s a sentence most people get to say when they’re in the middle of something hard, and that’s, “When this is over,” “When this semester’s over,” “When this project wraps,” “When I’m through this [00:03:00] treatment,” “When I’m better,” “When I’m on the other side,” and that sentence is a lifeline.

It lets you borrow a little bit of strength from the future, and you know what? I don’t really get to say that sentence. My version has a tail on it. Mine is, “When this is managed for now.” For now. That’s the tell. There’s always a for now hanging off the end. And I’ll be honest, the no endedness of it used to get to me more than it does now.

So how do you keep going when there’s no finish line to run toward? And here’s where I land, and I know it is not everyone’s answer. You, you stop measuring by the finishing line because there just isn’t one, and you start measuring by the day. I’m not doing the light box to get to some finish.

I’m doing it so that today works, so that the season of my life works. I made a decision a while back. I am not going [00:04:00] to live in the worst-case scenario, and I’m not gonna live in the fantasy where one day I’m magically permanently done either, though that would be nice. I’m going to live here in the managed for now and build my life inside it.

Now, that’s not the same as pretending it’s fine. It’s not fine. It’s tiring. Some weeks I am genuinely sick of the drive, sick of the schedule, sick of planning my life around when the office is open or that I need to go home and do a treatment or that I need to take this medication with me and it has to be refrigerated, right?

But sick of it and stopped by it are two different things. I do let myself be sick of it. I just don’t let it stop me. And I remember early on when I was doing light treatment in the early years after I was diagnosed, this would’ve been 2015, 2016, that, , I used to record all of my light box sessions on an Excel sheet, and I would take it in to give to my treating [00:05:00] dermatologist then so that he would know exactly what I’ve done because it’s really, you know, a lot of us might say we’re doing treatment and we’re not doing treatment, and it helps as a doctor to understand what you’re actually doing.

And I had a s- a time period where I was so ticked off about everything, I had actually put on there, at the weeks, it was like a couple of weeks, skipped treatment and, I had a note section that said, “Because I felt like a two-year-old and just didn’t want to do it.” And here’s where I should widen the lens because I can carry this the way I do partly because of what I have.

I have flexibility. I have a job that works with me. I have transportation, the money for gas, a dermatologist, a regular dermatologist, and then my specialist dermatologist who really moves mountains to makes it easy. Now, my fatigue is real, don’t get me wrong, but it is cushioned. So picture this same forever without the cushion, so you have forever with no finish line, and every appointment costs you [00:06:00] wages you can’t afford to lose.

Forever, and every session is maybe a childcare scramble or shift you had to beg someone to cover. Forever, and the gas money’s a real decision every single week weighed against the grocery money. My husband and I were looking at what we spent on gas last month, and my gas expenses last month were $180.

And, that is a lot for me. Obviously, gas has gone up recently. That’s had an impact. But driving that extra time to the doctor’s office three times a week has had an impact on that. That’s a lot of money for a lot of people. It’s a real decision every single week, and that can be weighed against the grocery money.

And for a lot of people, treatment fatigue isn’t just emotional. It is material. It compounds. Every for now comes with a bill attached, and the cruel part is a finish line does not exist for them either. They just have to keep reaching for it with a lot less in the tank. So when I talk about doing the hard thing forever, I never, [00:07:00] ever want it to sound like I think I’ve got the hardest.

I don’t. I’ve got it forever, but I have it cushioned, and a lot of people have it forever, and there is no cushion. They are exposed, and that is a different weight entirely. So no finish line. I’ve pretty much made my peace with that mostly on the good weeks, and there are weeks that are not what I would say are good.

I am not running toward a day this ends. I’m building a life that’s good anyway right in the middle of the forever. And if you’re doing your own version of the hard thing with no end, end in sight, I’m not gonna tell you it gets easy. It doesn’t. But you can get better at carrying it. You can let yourself be tired of it without being defeated by it.

You can measure by the day instead of the finish line. There is no finish line, but there is still a life, a real one, a good one right here in the middle of it, and that part, that good life part, that’s [00:08:00] the thing I actually get to keep showing up for. 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 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.