Randall H. Duckett

A newly graduated graphic artist hates to think about living the rest of her life in pain​

 

All Katie Schweiger wanted to do was eat a chicken sandwich with no chewing problems or chronic pain.

The 25-year-old Minneapolis native had been denied that pleasure for years because of issues with her temporomandibular joint (TMJ), which connects the jawbone to the skull. She says:

My pain is all over my body but is worse in the jaw. It’s mostly all achy all day every day, but I get random stabbing pain that lasts for about a minute at a time. I never know when it will strike. Each day, it’s a different spot and type of pain that will be my face for the day.

The winters in Minnesota are a particular challenge. “In the cold, my body feels frozen,” Schweiger explains. “My knees, ankles, and hips are like the tin man’s in Wizard of Oz.”

Schweiger also suffers from chronic fatigue that made it difficult to keep up her studies at the University of Minnesota-Twin Cities. Despite her pain and exhaustion, she graduated in May 2025. She then helped design this book.

Chronic pain started early

At age 11, Schweiger was diagnosed with an overbite. Her orthodontist recommended a Herbst appliance in addition to braces and rubber bands to correct the problem. Though the design of Herbst appliances might vary, most are cemented on the upper molars and lower molars (or lower bicuspids) with metal arms attached from the upper to lower part of the appliance.

The orthodontist added that young Schweiger could expect the elaborate device, braces, and rubber bands to take up to three years to give her a normal bite.

“But it took much longer than expected because the rubber bands weren’t doing what they were supposed to,” Schweiger says. “I needed even thicker ones to keep my bite where it was supposed to be.”

By 2015, four years later, she still had the braces and had developed chronic pain in her jaw and face muscles from all the hardware and effort to keep her bite corrected, which, unfortunately, didn’t solve the problem.

“That’s when my orthodontist had a very serious talk with me and my mom about jaw surgery,” Schweiger says. “And that was a moment that I will never forget. That was the one thing that we were trying so hard to avoid.”

A pair of painful operations

Schweiger says that during high school she was a theater kid, but her pain and fatigue interfered with her performances:

Obviously, I wanted to be there, but physically my body couldn’t handle doing theater every day after school. During the beginning of my junior year, we did The Wiz and all these different dance numbers. Doing more than one or two each day just really wore me out.

About that same time, when she was 17, Schweiger had the first of two operations by an oral and maxillofacial surgeon to correct her overbite and reduce her pain. First, he did lower jaw surgery and a genioplasty (surgery that realigns the chin by cutting and moving part of the chin bone) to bring her chin forward.

The recovery was horrible, but my bite was perfect. Six months later the braces came off and my oral surgeon cleared me — saying no more follow-up appointments. What a relief to finally see my teeth after almost six years!

Or so she thought. The next year, Schweiger’s overbite returned, accompanied by “an inability to chew correctly and really bad jaw pain.”

A second operation four years later in 2022 seemed to be a success, but her jaw pain once again returned, especially near her ears. Her surgeon figured that her jaw muscles were being strained, so he prescribed muscle relaxers, which didn’t help. He then recommended Schweiger see a physical therapist.

The PT explained in understandable ways what was happening and taught me what was going on in the brain to cause my pain. We figured out what helped and what didn’t. He assigned me to write about what pain means to me. It was one of the most therapeutic things I’ve ever done.”

Determined to get answers

In the essay, Schweiger wrote about what it’s like to be a young person in chronic pain: 

To me, pain can get so frustrating and debilitating. I don’t get to do or eat normal things with my friends because my face hurts too much — but I have too much energy to sleep. … Sometimes my pain doesn’t ‘turn off’ … and then I wake up in the middle of the night and … getting back to sleep takes forever because my face hurts. … Sometimes it feels like the pain from my jaw [goes] through my entire body.

“When my PT read the essay,” Schweiger says, “we went over every concern I had. We highlighted, we talked, I cried. Typing everything was such a needed release of my feelings.”

She dreads the idea that she may need more operations. 

Going through surgery twice isn’t fun, and thinking about going through it again makes me want to cry. It takes the pain and stress to a whole new level, making my clenching worse.

Between 2022 and 2024, Schweiger had well over 100 appointments with doctors, pain specialists, an orthodontist, and an oral surgeon, all looking to help her figure out the cause of her pain, fatigue, and other symptoms.

Unfortunately, she doesn’t yet have a satisfactory diagnosis. One doctor concluded she has fibromyalgia, but she truly doesn’t believe that is what is causing so much pain and fatigue. It has been an ongoing mystery that her providers, especially her primary care doctor, want to solve.

She hasn’t given up on a cure, but the thought of living in pain for the rest of her life is daunting. 

I do know it is a possibility. I would love a cure, but I really just want to know what is going on. I will be searching for answers with doctors and researching on my own. I am determined to get answers.

Life-changing pain

Chronic pain changed Schweiger’s life in so many ways — good and bad.

I’ll start with the bad. When I was in college, I didn’t have the energy to work on projects over the weekends. I had to lie down or nap a lot, then I’d work harder during the week on my design work.

The positive part of dealing with her pain is that she developed an interest in medical graphic design. All the appointments she’s had in the past year and a half and the amount of time spent in orthodontics and with the oral surgeon led her to write her thesis on helpful, proper patient education. Her dream is to use her skills to redesign the experience that pain sufferers like her endure daily.

My final project was a surgery recovery kit. The pamphlets and brochures, handouts, readings, and more showed me how to create patient education that actually makes sense for patients, their caregivers, and the general public.

As part of her portfolio, Schweiger reworked the problematic pain scale (see chapter 21) used by the medical community into a scale that makes more sense to her. The traditional scale rates pain from 0 (no pain) to 10 (worst pain imaginable) but doesn’t capture the real experience she had.

Her redesign was inspired by other alternative pain scales Schweiger saw online and merely part of a student project, but she someday hopes she can use her experience and expertise to improve healthcare communications for people like her.

Advice for other sufferers

Some advice I would give to other pain sufferers is to get a really comfy pillow for your head, then get more pillows — the cheap ones or the old ones are fine — but enough to surround your body like a bird’s nest. You need to comfort yourself.

And she recommends snuggle therapy. 

My cat’s purr is so calming and reminds me that it is okay to rest when I need to. My grandparents’ dog also puts a smile on my face. And he is a snuggle-bug too.

Schweiger felt dismissed by a rheumatologist she saw, who diagnosed her with fibromyalgia but ignored her jaw pain. 

He had a really poor bedside manner, and just said, ‘Well, this is it. This is the only possibility it could be,’ rather than ‘I think there could be something else.’ I was very frustrated. Thankfully, my mom was with me because I definitely cried in the appointment, especially because we kept mentioning my jaw and he ignored that part. My mom and I were both very angry and frustrated especially because it had taken four months to get to see this doctor. 

Still, Schweiger also advises her fellow sufferers to persist in their quest for solutions. “It is so hard not getting answers, and it would be so easy to give up. Don’t!”

She also suggests finding a group of friends who are supportive. 

It’s hard to make friends as a young adult. Find people who really understand what you are going through, who can be caring and compassionate and who check up on you.

Schweiger tries not to think much about how it will be if she must live the rest of her life in chronic pain. She’d like to get a firm diagnosis for how she feels. She is overwhelmed when she thinks, Wow. I’m only in my 20s and I’ve got this big thing to deal with.

Even if there’s no cure or treatment for what I have, I would at least like to know it’s something besides fibromyalgia. Just for my own sanity, because it’s driving me crazy not being able to research my condition beyond that.

Craving that chicken sandwich

And what about that chicken sandwich she wanted so badly?

Yes. Yes. So, after the first surgery, I really wanted a Jimmy John’s sandwich. I craved that the whole recovery time. Then after the second surgery and getting the all-clear to chew again, all I wanted was a chicken sandwich. I went to Chick-fil-A. Their lemonade is my favorite. I drove home and took a picture with the sandwich in front of my face to share with all my friends about how excited I was.

And did it live up to her expectations?

“Oh, yeah. It was delicious.”