Hannah Neukom was granted an award at Walk the Cure Arthritis in 2022.
Courtesy | Hannah Neukom

 

Senior Hannah Neukom is tired of people thinking arthritis is a condition that only affects old people. She grew up struggling with juvenile idiopathic arthritis, which is now evolving into rheumatoid arthritis, a chronic autoimmune disease that causes severe inflammation in her joints. After years of medical experience, Neukom recently started a podcast, “Read the Rheum,” to spread awareness about her condition and the aspects of everyday life, especially as a woman, that the disease affects.

 

Are you from Michigan? Where do you get your treatments?

I grew up in Hillsdale, actually, since my parents teach here. But I go to Cincinnati Children’s Hospital, which is a drive. My doctor there is one of the best pediatric rheumatologists in the world. Anytime I say her name around anyone in the nonprofit world, everyone fangirls.

 

The medical system can be really hard to navigate, especially with chronic illnesses, what has your experience been like?

The scary thing is there’s such a shortage of rheumatologists. Like any kind of chronic care, you end up not being able to get in for six months or having to wait on your primary care doctor’s recommendation– it’s really stressful.

 

What drove you to begin your podcast?

I didn’t want to hear old doctors talking about medical stuff; they cannot help teenage girls and boys figure this out in their everyday life. I was in high school and in a wheelchair, and what was I supposed to do? I began mentoring younger girls, middle schoolers mostly, and just talking to them about things like that. School is already hard and you’re going through awkward stages with puberty. To have a disease like this on top of that– what do you do?

How was your experience growing up different from those around you?

It showed up a lot in the little things. I had to wear a knee brace and it felt like the end of the world, a big bulky brace that I just didn’t want to wear. I was so embarrassed. Now that I look back on it, it wasn’t a big deal. My friends didn’t even really notice that because no one is looking. That’s what I’m trying to get out there: it is so hard and everyone’s feelings are valid. You just have to focus on yourself because most people don’t care. 

 

How was the transition to college?

It was stressful. I mean, it already is without having arthritis, and I just had that on top of it. I didn’t really know anyone else who struggled with it and when I met a few people, it was refreshing. You can talk about your condition with your friends, but they don’t get it the same way as talking to someone else who has it. It feels so nice to have someone who relates and understands what to most people is invisible. You can’t explain the fatigue and pain and swelling to people. I’ve had my doctors write notes and I began meeting with the deans very early on. I had to break it down like ‘alright here’s the deal.’ My body sometimes doesn’t work and I just won’t be in class, but I shouldn’t be penalized. I’m trying to keep up. I’m going to do well— just in my own way. 

 

Do you ever get comments about your condition from people who don’t understand?

Yes definitely, it is difficult to explain what exhaustion feels like versus just tiredness from life. I’m pre-med and I work at the hospital, so I’m drawing blood on my feet all day. And sometimes I have to call in and apologize. I’m not just calling off work for fun, I can’t get out of bed or wash my hands– they don’t want me there!

 

What is the most important thing for young people struggling with their health to remember?

I used to be a pushover. I would suffer through so much because I didn’t want to say I couldn’t do something. It felt embarrassing because if the person didn’t believe me, what was I supposed to do? You just have to learn to put your foot down and demand to be taken seriously. If people have a problem, they can call my doctor. 

 

Do people take you seriously?

I think being a young person who is sick is challenging because I look healthy. Someone hears I have arthritis and they say they never would’ve known. Maybe I should start wearing a t-shirt that says ‘I have arthritis.’ It’s not my whole personality, it just deeply affects how I live. 

 

You said you were pre-med. What are your career goals?

I want to do pediatric rheumatology and nonprofit work. Something like a rheumatology clinic because I’ve just done so much research and the majority of children who have arthritis come from low socio-economic statuses and can’t afford good care. The only places you find care are huge hospital systems and they’re so expensive– like insanely expensive. Family practice can’t take care of it. So we’ve got to do something where you get paid but also we need to give care to people who can’t afford it,people who don’t have the resources. There are seven states in the U.S. that don’t have any pediatric rheumatologists. 

 

What are some of your episode ideas?

The one I’m working on now is about stigma and how to erase it, not only with yourself, but with others. And how to get more confidence in having a chronic illness, being yourself, and feeling okay with all that. 

 

What is the goal of your podcast?

It started brewing in middle school because I went to a private school and didn’t know anyone else who had arthritis. I’ve always been interested in TED Talks, and I was talking to my parents around my sophomore year about how I wanted to do one and began speaking at arthritis conventions. I felt like I had something good to say, and the podcast is an extension of that. I mean, I was looking for podcasts based on arthritis, and it’s all medical stuff or old people. I don’t need information about what it’s like when your bones hurt– I’m 21. What I need is advice on what to do when I go to college, how to communicate with friends, and how to navigate classwork. People need someone who has been through it to talk to them about it because no one else knows.