Kayla Erb is a 27-year-old grad student, disability advocate, small business owner, and podcast host based in Rhode Island. After eight years of struggling through pelvic pain, ruptured ovarian cysts, and inflammation throughout her esophagus, stomach, and ilium, among other symptoms, Erb was diagnosed with Crohn’s disease. Crohn’s disease is an autoimmune, inflammatory disease of the bowel. It can affect anywhere in your digestive tract from your mouth to your anus. Her struggle to get diagnosed is not uncommon, especially with Crohn’s disease.
“My story is not different at all. There are so many people, especially people with ovaries, that have the same experience. They’re just totally dismissed when they have pelvic pains, so that’s why I talk about it so much. It’s why we started the podcast, really, to get people talking about their health and their bodies and their disabilities, their chronic illnesses. They are far more prevalent than we are led to believe.”
Handmade by KERB
Erb started knitting in eleventh grade, after teaching herself through YouTube videos. “I just never stopped, it’s really therapeutic for me. I like that I can just sit and stare off into space or watch TV and at the end of the day have something tangible.” The knit-ware store started with accessories before expanding. Now, she knits size-inclusive sweaters, cardigans, and bralettes. Eventually, Erb started making blankets and t-shirt quilts. “It started out with students or their parents and then I kind of aged out of that group for a while, and then it turned into memorial items.”
Throughout the pandemic, Erb has made memorial quilts for families of those who have passed away due to COVID. While she says it was uncomfortable making the blankets at first, messages and videos from recipients of her memorial quilts reassured her that her work brought others a sense of comfort. “I felt like I was able to make their experience hurt a little less. It’s been a learning experience to not have to fix it, but still be a little piece of their getting better. That’s how I try to look at my advocacy work too. I can’t fix everything, but I can implant an idea. I can get people talking about it, I can get people moving, I can slowly make those steps to get to a better place.”
The Sick Invite Podcast
The majority of her advocacy work is done through her podcast, “The Sick Invite Podcast.” Erb and her husband Ricky Grimes started the podcast after Erb was asked to be an honoree of the Crohn’s and Colitis Foundation Long Island chapter. After a few speaking opportunities, she realized that three-to-five minute speeches weren’t enough to get her message across. Thus, “The Sick Invite Podcast” was born. “I didn’t want to just have a podcast about Crohn’s disease. I think that autoimmune diseases as a whole need a lot more attention. But I didn’t want to leave it at that either, so I kind of just opened the door to be like ‘Hey if you’ve got problems, let’s talk about it.’”
Although the podcast does feature many disabilities, Erb does not label it as a disability show. “I think there are a lot of people who have disabilities, but don’t identify with it because they feel that they’re not sick enough or not disabled enough to identify with that community. There seems to be a huge connotation with being in a wheelchair and disability. And that’s not true at all. Disability is a spectrum, it comes in all shapes and sizes and you can’t see a whole lot of them.”
The show is a way for people to come and validate their experiences. It has featured guests who have a history of drug addiction, PTSD, ADHD, OCD, and much more. “We just wanted to let everybody know that you don’t have to be on your deathbed to ask for help or to want to talk about what’s going on in your life.”
Challenges and Obstacles
One of Erb’s biggest struggles with Crohn’s disease was getting diagnosed in the first place. “One thing that I did have to overcome was getting the strength to let me finish my sentence. My symptoms started when I was 14. I remember it almost happening overnight. I was in a lot of pain and they told me I had an ovarian cyst, dysmenorrhea, and irritable bowel syndrome. And those things weren’t wrong. I did have all of those things, but wasn’t all that I had.”
The next eight years were filled with different doctors and getting the same answers over and over, with no real solutions. It wasn’t until her 22nd birthday that an ER doctor suggested that her symptoms were signs of Crohn’s disease. When explaining the hurdles and struggles she faced when trying to obtain her pain medication, visit , Erb says that she was often dismissed or accused of “suspicious behavior.”
“I didn’t experience too much else because I have a lot of privilege—I’m a skinny, white, straight lady who has health insurance. I have money, I have an education. I’ve never really been discriminated against, so the fact that I had such a hard time, even with all of this privilege, I just think, ‘What about everybody else? What about all of the other people who have these problems who also face racism or homophobia or transphobia, and still aren’t getting the help they need?’ I also feel a duty with my privilege to call these people out on this behavior because it’s damaging and can threaten people’s lives.”
Advice for Others
As for advice for fellow disabled entrepreneurs, Erb stresses the importance of putting yourself first, especially when it comes to getting diagnosed. “Sometimes you can get really rushed through these appointments, and the best advice that I ever got was to say “I’m not finished” when they try to wrap things up. They need to see the whole picture to diagnose you and analyze you properly so that you can get the right care. You don’t take five minutes, you’re different. You have a right. You’re a patient, you’re a customer. If they’re treating you badly, get a second opinion, get a third opinion. Don’t stop. Don’t get discouraged.”
Has Kayla Erb inspired you to talk about your chronic illnesses? Let us know down in the comments.
This article originally published on GREY Journal.
Great article. Self advocation is important.