Why Volunteering When You Have A Chronic Disease Matters – Ep. 20
In this episode, I share what volunteering has taught me while living with Mycosis Fungoides. From the General Federation of Women’s Clubs to the Cutaneous Lymphoma Foundation, I’ve seen how giving back builds connection, skills, and visibility—but only if you protect your energy. I talk about choosing roles that lift you up, setting boundaries, and how volunteering reminds me I’m more than my illness.
Why Volunteering When You Have a Chronic Disease Matters – Ep. 20 – The Fine, But Not Fine Podcast
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
You all today, I want to talk about something that’s really kept me grounded and connected through all the ups and downs of living with Mycosis Fungoides. And surprisingly, to some it may be, it’s volunteering. And volunteering while you’re managing a rare or chronic illness is a little different. You really have to understand your limits. You have to balance energy and expectations, but it really is one of the most rewarding ways to remind yourself and everyone around you that life doesn’t stop just because you’re sick.
So before I get into the realities of volunteering, I want to share with you what it looks like in my own life, because I’m not talking theory here. I’m talking lived experience.
So I have been a part of the General Federation of Women’s Clubs for years, decades, really. First at the local club level, then serving at district level, and for six years as a mediator for the Federation as a whole. And that role was about helping clubs and leaders navigate conflict and find resolution, which was really, really meaningful work for me. I have met so many amazing men and women and learned so much about wants, desires and the things that make us human and happy.
I currently serve on the board of the Cutaneous Lymphoma Foundation, which is very personal to me. It’s a way to give back to a community that has supported me through my own diagnosis and treatment, and to help others who’ve been diagnosed with cutaneous lymphomas.
Back closer to home, I’ve been a chair and board member for our local homeless shelter, and that was some of the most challenging and valuable work. And I’m really proud of the impact that I had there and the people I was able to work with and learn from.
And I volunteered with professional organizations such as the Public Relations Society of America and the American Marketing Association, which is another type of service or volunteer work that’s often overlooked. And those roles are important because they show people that, yes, you can live with cancer or a chronic illness and still contribute in a professional space.
And for me, volunteering is really woven into all parts of my life, community, advocacy, professional service, and through it all, the common thread is this: volunteering really reminds me that I am more than my disease.
No surprises here, but volunteering is not just showing up and smiling. It can mean board meetings where you have robust conversations with dissenting opinions, late night emails, lots of event planning, or all of the things that go into leading a project. Now, you combine that with doctor’s appointments, medication, fatigue or side effects, and it can sometimes feel overwhelming and sometimes really incredibly energizing.
And that’s why it’s so important to understand expectations up front before you start volunteering. You need to know, for any organization or group you’re going to volunteer with, how many hours is this role that you want to volunteer, and how many does it really take? Is it seasonal? Is it ongoing, what’s the length? Is there a term? What are the abilities to flex it around your treatment schedule today, and what’s the flexibility if your treatment changes in the future?
Now for me, I’ve learned to be very clear from the start. I don’t always need to disclose my whole medical situation. Obviously, most people know a lot about it, but I do need to be upfront about what I can and cannot do or will or will not do, and those are two very different distinctions. Yes, I can do that, but I will not, Is something you need to be be clear about for yourself. And you know, I have said yes. To roles that were a great fit, like serving as a mediator for the general Federation of women’s clubs, but I’ve also said no when I knew it would stretch me too thin, and both decisions were the right ones.
It’s incredibly important to be true to yourself, because sometimes you know what we do? We volunteer out of guilt, because we don’t want to disappoint someone, or because we used to do more. And I’m telling you, this is not helpful to you and it is not helpful to the organization that you are volunteering with. I have had to learn to ask, “Am I doing this because I want to or because I feel like I should?”
And I think about energy like money in the bank, if I overdraw, I’m the one who’s going to pay for it later with exhaustion and setbacks in my health. So now I set boundaries without guilt, and I’ll tell you, it’s not always easy, but it is always worth it, because I can still give my best sustainably.
Then there are the expectations, right? Yours and everybody else’s. For yourself, it is so easy to fall into the trap of “I used to do more. I should still do more,” but life with a rare or chronic disease is different. It doesn’t mean you’re any less valuable. It just means you show up differently for others. People see you as reliable, experienced, and they lean on you, and sometimes they forget, and you have to gently say, I can’t take this one on, and I’m telling you that’s not failure, that is wisdom.
And I found that volunteering, it’s not about doing everything. It’s about showing up in the ways that matter the most to you, where you can make the impact that matters the most to you, which is what we want when we volunteer our time, right?
And here’s a really awesome part, the benefits of volunteering are pretty much endless. So fellowship, that’s really the first one. I cannot overstate how much human connection matters, being in the room, being on the call, or side-by-side with people who share a cause. It is life giving. We spend way too much time as people, isolating ourselves from people, and it is not good for us, right?
Through the General Federation of Women’s Clubs, I’ve built friendships that mean the world to me. Through the Cutaneous Lymphoma Foundation, I’ve connected with people who understand my world in a way few others can, and that wouldn’t happen if I didn’t volunteer and put myself out there and open myself up to human connection.
There’s also knowledge and learning. I have gained skills I would never have learned otherwise. Serving as a board member and chair of a board taught me governance, nonprofit, leadership, financial acumen, and I’m telling you, conflict, conflict mediation. I’ve also learned more about empathy, and I mean true empathy for others and the road that they walk.
And you know, life moves forward. This one’s really a big deal. Volunteering reminds me that life doesn’t stop with a diagnosis. I’m still growing, I’m still learning, I’m still contributing.
And volunteering in professional organizations? That’s really powerful too. It sends a message that, yes, I’m living with cancer, but I can still show up, I can still lead and I can still contribute in professional space. And that visibility matters because it gives you an opportunity to demonstrate to others that something like cancer or whatever you’re dealing with is not necessarily a career ender. People can still benefit from and really want what we have to give professionally.
And honestly volunteering, it reminds me I’m a person with a whole lot to give.
So how do you volunteer wisely, right? Well, you need to pick roles that energize you, not drain you. And if long term commitments are tough, look for short term projects or one off events. This is one where the women’s club that I belong to locally is really great at. It’s a club, we get together once a month, we email or talk or meet or do other things in between, but we kind of pick and choose what we want to do and when we want to do it. There are certainly some things that are a little bit more involved, but that’s a really great way to get started.
You can also look at remote or online volunteering. That way you don’t have to worry about flares or heavy treatment weeks. And there’s one that’s interesting I know about there. I think it’s the Library of Congress has people reading old documents so that they can take the documents and basically type them into this system so that they can provide it in another way. So imagine old, historical, written in cursive kind of documents. And those are all just great ways to do things that can work for you.
And it’s important to remember that small contributions matter. They don’t have to be big. That’s, yeah, that’s it’s nuts to think that’s what it is. You do not have to leadthe board to make an impact. You can send an email, you can make a call, you can show up at a meeting. Those are all very powerful things.
And it’s worth noting that volunteering is is more than just service. It’s a statement right? It shows the world that people with rare diseases or chronic illnesses are not defined by what’s happening in our bodies. We are leaders, we are organizers, we are teachers and we are advocates, and every time I take a volunteer role, not only am I helping others, I’m quietly saying cancer does not define me.
So here’s what you can take away. Volunteering is possible even when you live with a rare chronic illness. It just takes honesty, it takes you understanding and communicating your boundaries, and really a willingness to show up just as you are. And it’s worth it, because volunteering brings connection, growth and purpose, and it’s a really powerful reminder that you are part of something bigger.
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.