Katie Curnow (age 39, she/her) is the Advocacy Director at The Disability Network in Flint, Michigan, and lives with Ehlers-Danlos Syndrome (EDS), a connective tissue disorder. In this interview, she reflects on her long struggle to receive a diagnosis and the challenges of being heard in medical spaces. Her story underscores the importance of self-advocacy and her dedication to the future of the disability community.

For more Portraits of Persons with Disabilities interviews,click here.

Laura:

Would you mind sharing about your disability?

Katie:

I have something called hypermobility spectrum disorder—possibly hypermobile Ehlers-Danlos syndrome, though this has yet to be diagnosed. Along with it, I deal with coexisting conditions like anxiety, and possibly ADHD.I also have an interesting immune system condition called eosinophilic esophagitis. (That’s a fun one—I had to practice saying it!) So, that one could also be related, or it could just be an overactive immune system. It impacts what I eat, how I eat, yeah.

Laura:

Do you have food sensitivities?

Katie:

Yeah, I’m one of the rare cases—I’m allergic to black pepper. My life is pretty much dictated by flare-ups, so I’m at the mercy of my immune system or whatever my body decides to do at the time. 

Laura:

That sounds really challenging.

Katie:

I mean, I'm very used to it. And having answers instead of feeling like it's all in my head, or having doctors not understand or believe me for years, I feel better just knowing that. 

It wasn’t until my knees started making a horrible noise that anyone took me seriously. Even then, my doctor said, “It’s just your shoes.” I responded, “No,” and he took his stethoscope, placed it on my knees, and said, “Oh my gosh, that’s your knees.” I replied, “Yes.” Then he said, “I’ve never heard that before. In 40 years of medicine, I’ve never heard that.” So I said, “Yeah, for the last 10 years I’ve been telling you something isn’t right.”

Laura:

Being a young woman too, they just don't want to believe you. 

Katie:

A lot of mine got confused with being postpartum. So, things amplified after pregnancy, and became problematic, because some things just completely deterred me from certain activities. Whether it was hormones or just changes in my body, I’m not sure. It was fascinating because I didn’t know what a typical postpartum experience was like. By the time I had three kids, I thought, “Wait a second, something doesn’t add up—this isn’t just postpartum.”

Laura:

What do you do for fun?

Katie:

Okay, I love talking about what I do for fun. Without focusing on wine too much, I’ll describe my perfect day—one that hasn’t happened in a long time. Okay, so I would be sitting outside on the patio drinking a glass of red wine and reading a book. And just like, it's like dusk and it's just beautiful outside. There's no bugs for some reason, like the bugs have just gone missing. 

Laura:

I am right there with you. What’s your favorite kind of red wine?

Katie:

Well, I'm really bad at wine. So like, whatever is like under $17 at the grocery store. I prefer when it's a twist top.

Laura:

Twist tops are so much easier—I’ve had my share of struggles with corks.

Katie:

I used to have this really trustworthy, corkscrew, and now it's not as trustworthy anymore. So I'm like, I can't get it, we gotta open it. So, now I have one of those cool like opener helpers.

Laura:

Yeah, I've seen those. 

Katie:

They're the best. Everyone should have one. I think there's like, battery operated ones. But there is something to like, I don't know…

Laura:

Doing it yourself?

Katie:

Yeah, but even my hand mobility is not always the best. That’s why I love adaptive tools—there’s one with different-sized circles you can use to open all sorts of things.

Laura:

Oh, I've seen those. I think it's for people with arthritis too? I've followed some accessible cooking accounts, because yeah, my wrist strength isn’t great.

Katie:

Yeah, it's different from day to day. Some days I'm like, I can do this fine, and other days, I’m like, I've dropped everything. Everything is dropping.

Laura:

[Laughing] I get that. What kind of books do you like to read?

Katie: 

I love Margaret Atwood very much. I love literary fiction. It’s one of those types of things I don't make enough time for anymore. I'm in the middle of like, probably literally 20 books on Goodreads, where I've tracked like 10 pages so far. But yeah, I love Margaret Atwood. I actually just got a book from her at the library. I didn't know she had a new collection of short stories.

Laura:  

I haven't read any of her stuff, but I know about A Handmaid's Tale and that it's dystopian.

Katie:

That’s what I like, the let's just play around with the world. Where are we? Where are we going? What track are we on? 

Laura:

What motivates or inspires you?

Katie:

That's a good one. I like storytelling. I like when people share their stories. I like hearing people's stories. I like getting really excited about things with other people. I think one of the things for me that's, like, the most inspiring is when people are really passionate about something. We were actually just talking recently about how you kind of find your people and typically it’s the people who are really excited about like a narrow thing. I don't have to love that thing, but how much you love that thing, makes me love it.

Laura:

I understand that, as here I am doing it to you. Are you into podcasts at all?

Katie:

I'm really bad at it. I listen to one. I don't know why this one has resonated with me so much that it’s one I have started listening to routinely. 

Laura:

Which one is that? 

Katie:

It's called And That's Why We Drink. It's a true crime and ghost story one.

Laura:

That’s what started me on podcasts, the true crime ones. I listen to too many, but Armchair Expert is one I listen to a lot. 

Kaite:

Okay, that's on my list. I haven't gotten there yet. 

Laura:

I think you’d like it, because he interviews celebrities, but also experts on things. It's people who are really passionate about one thing and he asks really good questions about it. It's on Spotify.

Katie:  

Okay, perfect. I love Spotify and anything on NPR, like The Moth. I like The Moth.

Laura:

Last question. What change would you like to see in the future for disabled people?

Katie:

This is the one I've been thinking about the most. I would love for there to be one answer. Like, the one thing that would just like, have it fixed, you know? Because it's so many things. I think one of the first steps is about perception, and about like, just changing minds and people's biases. So, I don't know what that is, and like, some of that is our work. How do we get people to see, to see disability in themselves, that shame and stigma, and like to be eased of that? For that to happen, society needs to change—but it’s a “chicken or the egg” scenario. Do we first focus on helping people with disabilities embrace their lived experiences and take pride in themselves, or do we push society to change how it views disability? So we're not born with these ideas of ourselves. I get excited about this up and coming generation and how they come about identity and pride and really living authentically. I don't feel like I had that. For me, it was a lot about hiding and a lot of shame and like, coming with a lot of equipment and things. Now, people just like, love having asthma like, it's just a thing, and I'm like, oh, okay. I remember going to sleepovers with a nebulizer and being like, this is cool, right? This is fun? So I'm excited that somewhere along the way, we're doing something right for young people. Like with my daughter, we have a lot of pride in it. We talk about it. We talk about advocacy, self advocacy. Knowing your rights, knowing your worth. So, maybe that's part of it.

Laura: 

Wow, you give me hope for the younger generation.

Katie:

I put it all on them. I feel like I’m too tired. It has to be them right? 

Laura:

Do any of your kids have hypermobility?

Katie:

My daughter, definitely. And she got really interested in dance, which surprised me. I've never done anything. I'm very much like what I would consider a basement kid. I love being in the basement, inside. And it's funny too, I just thought I was bad at sports. Why does it hurt so much? Why am I so bad? It never appealed to me—I wasn’t particularly graceful. But she’s really thriving! Dance helps her ADHD by giving her focus and providing the movement her body craves. She's very sensory seeking, so ballet really does something lovely for her. And I was like, this is amazing. She has a really great dance instructor who noticed her hypermobility right away, which means she's not gonna be as prone to injury because there's someone telling her, “This is what it feels like to stand up straight. Your straight is gonna look different than hers.” Someone really looking at her ankle sleeve, and then I was like, “Can you show me how to make my ankles not do that?” She told her how to keep your torso upright and keep your legs slightly bent. I was trying to practice that too, so my knees weren't locking. It was so unnatural. I love that she'll be learning this about her body and keeping it safe. 

Laura:

Yeah, and she’s learning it at such a young age, that's got to be so helpful. 
Katie:

Ballet is a weird one, where like, hypermobile people excel in it because of their bodies and then their bodies get trashed from dance. I want her to be able to love it, but she made a comment the other day, “Well dance is pain,” and I was like, “No. Where are you getting this? Whoever said that is terrible.” I want her to know that, like, pain is part of life, but it's not how you know you're doing life. I don't want pain to be the defining thing, like, I know I'm alive because I'm in pain. 

Laura:

I’ve seen a lot of people with Ehlers-Danlos who were dancers.

Katie:

I think it's because you prize their extensions. Who’s got better extensions than people who are hypermobile? Again, I imagine if I had any rhythm or grace maybe it would have been lovely. I'm not athletic at all and it doesn't fill me up.

Laura:

Yeah, I understand that. So is it just your daughter who you think is hypermobile? What about the others?

Katie:

It's hard to tell, because they're younger. I know there's some level that bodies are hypermobile and like, squishy? It's just like, once we get to a certain point, that we'll just keep an eye on it. And like, she started to kind of hit some of the same milestones I did. Like she developed asthma at the same age and so I'm just kind of interested to see. I tried to mitigate like, X, Y, and Z because the research says this, but it really is just kind of luck of the draw. She's got a good mom for it. I got experience, at least

Laura:

That’s true. Is anyone in your family like your mom or any one hypermobile that they know?

Katie: 

Well, my cousins are and then my grandmother, we think we got it from her only because in pictures, she has a very similar frame as me, but like her hands, like piano playing hands, more than an octave. She was a twin and she looked vastly different than her twin sister. She was much taller, and again, very long arms and limbs. And then my aunt Donna was very petite, so I don't know. And the genetic testing, nothing's come from it. I ended up paying for it myself, because I couldn't get the doctor to order it.

Laura:

Yeah, that's what I've heard about genetic testing, that usually it's paid for out of pocket. Didn't you say the genetic testing didn't show much?

Katie:  

No, it found other weird things. Which, like, great, I wasn’t worried about my eyes but now I am. But I know, the research, they're still looking at a lot of that stuff, they just don't know what the variant looks like for collagen. And at least one doctor was like, yeah, that's not right. That's all I needed, someone to say it's not all in your head.