Finding Joy While Chronically Ill w/ Dr. Brentia Caldwell-Smith Ph.D., LPC, NCC, ACS, CPCS

When you get diagnosed with a chronic illness, it can feel like your whole world just shifted. And honestly? It did. So this might come as a shock to some, but… You can still have fun. You can still feel connected and joyful. It will just look a different than it did before.

I sat down with Dr. Brentia Caldwell-Smith, founder of The UP Center, to talk about what it really means to live well with chronic illness. Brentia has lupus and interstitial lung disease, and she's also a licensed professional counselor who specializes in chronic illness navigation. This conversation was full of real talk about grief, community, joy, and how to prioritize yourself when the world doesn't always understand what you're going through.

When Loss Doesn't Look Like Loss

One of the first things we dove into was disenfranchised grief. This is grief that people don't really recognize or validate. Like when you lose a pet and people are like, "Why are you so upset? It's just a pet." But you loved that pet, right? And it was a major part of your life. 

The same thing happens with chronic illness. You're grieving the loss of your old self, the loss of abilities you used to have, the loss of the life you thought you'd be living. But people around you might not get it because you're still breathing, you're still here. Brentia explained that this kind of grief is complicated because you're feeling all these feelings, but society doesn't really make space for them.

And culturally, there are even more layers to understand. Dr. Brentia talked about how being a Black woman in the South, there's this pressure to just push through, to be strong, to not give the illness "too much credit." Add in religious messaging about praying it away, and suddenly you're carrying shame on top of grief on top of your actual symptoms.

The work in therapy, Brentia said, is helping people own their diagnosis and their feelings about it. It's okay to feel however you feel about this. You're allowed to have a crappy time for a little bit while you adjust. Because getting diagnosed with a chronic illness is like starting a new job you never applied for.

Community Is Everything

Here's something that came up over and over in our conversation: community matters.

Dr. Brentia's dissertation research found that unmarried women without children who still had strong communities actually felt really good about their lives. They had friends, hobbies, and connection. And that sense of belonging made all the difference. This shouldn’t be shocking, it should just be a normal understanding, but I think we all understand that the society we live in makes this seem abnormal.

So how do you build community when you're dealing with chronic illness? One thing Dr. Brentia does is asks her clients identify their top two interests or hobbies and then connect with people around those things. Maybe it's weekly, maybe it's monthly, maybe it's quarterly depending on your energy levels and personality. The point is to find your people, and show up.

And sometimes that means trying something completely new. One of Dr. Brentia's clients decided to take up golf even though she'd never played before. It's about finding connection points, whether that's a shared interest, a shared identity (like being a Black woman in tech), or even just a "maybe" you've been curious about.

But here's the thing: you also need community with people who get what it's like to live with your specific condition. Brentia calls people with lupus "lupies," and she talked about how important it is to connect with other lupies who want to enjoy life, not just the ones who are in the depths of despair. You need people who understand what you're going through AND who can show you that joy is still possible.

You Can Still Have Fun (Really)

This is one of Dr. Brentia's core tenets in therapy: you have to have fun. If you're not having any joy, any fun, then your life is going to feel like it sucks.

Dr. Brentia doesn't let her illnesses hold her down. She's out living her life, going to concerts, trying new recipes, and even going to bars with her oxygen machine. At first, she used one of those rolling oxygen machines and felt self-conscious about it. So she found a portable one that she could strap on and still feel confident while getting oxygen support.

That's the mindset shift she helps her clients make: you can still do a lot of the same things you used to do. You just have to do them differently. If you're really into fashion, bedazzle your mobility aid. If you need a cane, get a cute cane. Make it work for you.

And people are going to look. And remember that while some people might be judging, most people aren't. They're curious. They're inspired. They're thinking, "Wow, she's out here living her life." When Dr. Brentia started being more vocal about her lupus, other people started coming to her saying they'd been wondering if they had it too, or thanking her for the inspiration.

The more you show up as yourself and do the things that bring you joy, the more you give other people permission to do the same.

Choosing What Matters

We also talked about what it means to prioritize your own opinion and needs over everyone else's. Because at the end of the day, you're the one living with this condition. You're the one who has to make it work for you.

That means tuning out the outside noise. That means deciding what's going to make you feel most like yourself. That means accepting that some people aren't going to understand, and that's okay. You don't need everyone's approval to live your life well.

And right now, with everything happening politically and all the uncertainty around healthcare and disability rights, it can feel really overwhelming. Dr. Brentia's approach is to find the pockets of joy wherever you can. Control what you can control. Choose one thing to focus on instead of trying to fix everything. And then go enjoy your weekend.

You didn't ask for this. You're navigating it like everyone else. And you deserve to have some fun along the way.

Disclaimer: Everything we discuss here is just meant to be general education and information. It's not intended as personal mental health or medical advice. If you have any questions related to your unique circumstances, please contact a licensed therapist or medical professional in your state of residence.

Destiny Davis, LPC CRC, is solely responsible for the content of this article. The views expressed herein may or may not necessarily reflect the opinions of the guest.

The content in this blog post comes directly from a real, human interview between Destiny and her guest on The Chronic Illness Therapist Podcast. This written version was formatted using AI. Listen to the full episode to hear the actual conversation.

Listen to Dr. Brentia’s interview with me, Destiny Davis, on Ep 106:Finding Joy While Chronically Ill w/ Brentia Caldwell-Smith Ph.D., LPC, NCC, ACS, CPCS

Listen on Apple

Listen on Spotify

 
Podcast cover art for "The Chronic Illness Therapist Podcast" with Destiny Davis, LPC CRC

Listen to Brentia’s interview with me, Destiny Davis, on Ep 106: Finding Joy While Chronically Ill w/ Brentia Caldwell-Smith Ph.D., LPC, NCC, ACS, CPCS

Listen on Apple

Listen on Spotify


Brentia Caldwell, Licensed Professional Counselo, Certified Professional Counselor Supervisor and founder, smiling wearing a vibrant red jumpsuit while sitting on a white sofa

Dr. Brentia Caldwell-Smith is a Licensed Professional Counselor and Certified Professional Counselor Supervisor who founded The Up Center with the mission of empowering individuals to prioritize their mental wellness and heal on their own terms. With a Ph.D. in Counselor Education & Supervision from Mercer University and over a decade of clinical experience specializing in chronic illness navigation, women's issues, grief, and military family support, she now focuses primarily on Clinical and Licensure Supervision, mentoring emerging clinicians in Georgia and Colorado toward independent licensure.

Connect with Dr. Brentia:

Website


Destiny Davis, LPC CRC, smiling in a pink sweater standing outdoors with crossed arms

Meet Destiny - The host of The Chronic Illness Therapist Podcast and a licensed mental health therapist in the states of Georgia and Florida. Destiny offers traditional 50-minute therapy sessions as well as therapy intensives and monthly online workshops for the chronic illness community.

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When Your Labs Are Normal But Your Body Isn't: Understanding Invisible Illness