The Waiting Rheum

Chronic illness doesn’t always look like a comeback story. Sometimes it looks like trying to get through the day with a body that feels glitchy, a calendar full of appointments, and a brain that’s doing math on symptoms you can’t fully explain. We’re Jen and Stasha, and we’re inviting you into our waiting room where the humor is dark, the stories are real, and the goal is simple: feel less alone in the messy middle of disability and chronic disease.

We start by introducing ourselves and pulling back the curtain on our medical charts. We talk about the “uninvited guests” that have shaped our lives, including anxiety and panic, rheumatoid arthritis, Hashimoto’s thyroiditis, PCOS, Sjogren’s, endometriosis, inflammatory neuropathy, familial hypercholesterolemia, alopecia areata, osteopenia, psoriasis, and osteoarthritis. We also name a feeling many listeners will recognize: getting a diagnosis can be both relieving and infuriating, because answers bring validation, but they also bring a new kind of grief and a long list of “what now.”

From there, we dig into the bigger picture of women’s health. Why does autoimmune disease so often pile up? How much does stress and the pressure to “do it all” affect our bodies? And what happens when we’re taught to treat discomfort as private, especially when period pain gets dismissed as normal even when it’s a sign of something bigger like PCOS or endometriosis?

If you’ve ever felt minimized, gaslit, or just exhausted by the whole system, you’ll hear yourself in this conversation. Subscribe, share this with someone who needs it, and leave a review so more people can find the waiting room. What’s one symptom you wish someone had taken seriously sooner?

We are not doctors, just two chronic illness patients sharing our perspective, lived experience, and the ins and outs of navigating this journey.

Connect with Jen: https://www.instagram.com/jenthegracefuladvocate/?__pwa=1

Connect with Stasha: https://www.instagram.com/tenaciousinme/?__pwa=1

Join the Rheumatoid Arthritis Connect Group: connectgroups.arthritis.org/groups/rheumatoid-arthritis

Use code Gracefully_Jen for 20% off compression gloves with her affiliate link:

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Transcript

Chronic Illness Without The Cliches

Speaker 1 0:00

Living with a chronic illness isn't always about warrior metaphors and beating the odds, but sometimes it's just about figuring out how to exist when your body feels like a glitchy operating system. This podcast explores the messy middle ground of disability, the grief of the former self, the absurdity of medical gaslighting, and of course, the dark humor found in the waiting

Welcome To Our Waiting Rheum

Speaker 1 0:25

room. And speaking of which, welcome to our waiting room. I'm Jen. I'm Stasha. And we are so happy to have you here. And you might actually remember us from the podcast My Spoony Sisters. Stasha was an ongoing guest I brought back many, many times. A few months ago I started a new job. I thought, let's focus all my time and my energy on that. Anyone that knows me well knows that I missed the community and I missed chatting with my friends. So I talked to Stasha a couple months ago and I said, Hey, I've got this crazy idea. One in. And you might have laughed at me for a half a second, but then what did you say?

Speaker 1:03

Absolutely. I'd love to. I'm so glad you're here. I am too. This is a great idea. I think together we're gonna have a lot of fun here.

Speaker 1 1:11

I sure hope so.

Jen Names The Uninvited Guests

Speaker 1 1:13

To get started, I think it's really important that we let people know a little bit about ourselves. I've I've got a couple questions we're gonna cover so that people can get to know us if they don't already. I'm gonna jump right in if you're ready for that. The name on the file, the question. So let's pull back this curtain on the medical charts. What are the names and these uninvited guests living in your body? And can you think of what that specific moment was like when you finally had a name to attach to your pain?

Speaker 1:42

That is a big question. I have a lot of uninvited guests that have stopped by over the years. I guess we'll start with anxiety because that's been here as long as I have, as far as I can figure. It's always been something I dealt with even as a little kid. My mom would remark that I have a nervous belly. One of my anxiety symptoms that's most constant is probably the nausea. And then sometime in my teens, things started to go a little haywire. It wasn't until after I started having kids that I found out I had Mihashimoto's thyroiditis and polycystic ovarian syndrome. Those both kind of showed up in between having my two boys, I believe, or perhaps shortly after my second child. From there, somewhere in my mid-30s, rheumatoid arthritis joined the party, loud and proud. Perhaps it was just there all along. That's kind of what we suspect. But I remember being really relieved and annoyed to find out that that's what was going on, to have that answer and uh to have some sort of a diagnosis finally, but also not looking forward to all that it can bring with it. And then the most recent stop by is secondary showgrins. It brings dry eyes and dry everything. It's great. It's a good time. That sounds like a blast. Absolutely. It's it's been a an absolute circus.

Speaker 1 3:11

Well, I think I can relate.

Stasha’s Growing List Of Diagnoses

Speaker 1 3:13

I mean, of course, I'm gonna start off with saying, yep, anxiety disorder, panic disorder. That was my first friend. And that started up when I was about 12 years old visiting family in Vegas. And it's a fun story in itself, but that was my first experience. And and following all that, it wasn't until, you know, having kids and being a mom to three teenagers that all of a sudden, hmm, rheumatoid arthritis wanted to jump in there. And actually, even before that, it was endometriosis and I had to have an unexpected hysterectomy. So yeah, that was super fun. Followed by inflammatory polyropathy, which joined my chart without me even knowing. I love when doctors add things and they don't even tell you you live with it.

Speaker 3:58

Love when that happens.

Speaker 1 3:59

Familial hypercholesterolemia. Say that one 10 times fast. That one's been a fun friend that I've been dealing with since gosh, I think I was 29. Alopecia area was my newest one back in 2023. I've got osteopenia. Don't forget pustular psoriasis. That's another fun story. And then, of course, my last fun friend is osteoarthritis last year.

Speaker 4:25

I forgot, I forget about osteoarthritis. You've got quite a gang there.

Speaker 1 4:29

I think we both do, and I think you described it well. It's a circus. It really is.

Why Autoimmune Hits Women Hard

Speaker 1 4:34

All the clowns, all the monkeys, few elephants. Yep. They definitely say, you know, autoimmune likes friends.

Speaker 4:42

It does. It doesn't say how crazy its friends are though, does it?

Speaker 1 4:46

Yeah. And it and it loves women.

Speaker 4:49

Yes.

Speaker 1 4:50

What is up with that? Like we don't have enough to deal with. Well, honestly, okay, you guys might come for me and that's fine, but this is a conversation that many, many people talk about. But women, we put a lot of undue stress upon ourselves. Raising the kids, getting things ready for husbands, doing all the things, holding in all the stress, holding in all the concerns and the pain. And that is really harsh on your body. And more and more it sounds like they're thinking this, it's like it activates these chronic illnesses that are hiding in our bodies.

Speaker 5:25

That's what I'm hearing. Yeah. It seems like our do-it-all lifestyle might be backfiring on us pretty hard.

When Period Pain Gets Dismissed

Speaker 5:33

I also wonder how much it's the way that we, I don't know about you, but as a young lady, when I started having cramps and whatnot, I was told very much that's keep this to yourself. Don't let other people know you're uncomfortable. Discomfort isn't something that we're taught to share. I wonder how often that leads us to keep our uncomfortable symptoms to ourselves for longer than maybe we ought to.

Speaker 1 5:57

Exactly. And when we start our periods at that young, tender age, we're also told this pain is normal. This is to be expected. What we don't talk about is how for some women, it is not normal. It is not expected. There's such things as PCOS, there's such things as endometriosis, there's such things as this is bigger than just period pain.

Speaker 6:20

Absolutely. I don't know how many times as a teenager I had somebody minimize what turns out was actually really it was big pain. Now that I understand the disorders that I had, that's just it's awful. I I have made it a point to try really hard not to do that to somebody else.

Speaker 1 6:39

No wonder we were cranky teenagers.

Speaker 6:42

No kidding. It was a horror show.

Speaker 1 6:44

Yeah. Now I understand why. I think it honestly made me a better mom and more understanding to my girls as they were dealing with this crap.

Speaker 6:51

I bet it did.