Living with pain: UVU graduate reflects on dealing with a chronic diagnosis

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Looking back, there were many moments and various signs signaling there was something wrong. But nothing big.

Just little, nonchalant things Lora Kendell mentioned to her doctor when she was in high school.

Things that would have never mattered if the pain did not happen continually and intensely during her senior year of college. 

Kendell, a UVU graduate from Spanish Fork, had never heard of fibromyalgia before. Most people she talked to had not either. There are no doctors who specialize in fibromyalgia, very few medications that are specifically for it, and there are no treatments or cures. The medical world does not even have an explanation for why it happens or what causes it. It just is. 

Kendell was diagnosed with fibromyalgia at the age of 22. She lost a lifestyle of full independence, freedom and activity and gained a life of constant pain and dependence.

Lora Kendell sits at the Delicate Arch in Moab, Utah. Before she was diagnosed with fibromyalgia, she often did active, outdoor activities. (Courtesy of Lora Kendell)

Kendell said fibromyalgia, or fibro, is a chronic illness where the nerves in the body miscommunicate with the brain and send incorrect signals. 

For example, Kendell said it is like the nerves in her arm are saying she is being stabbed or punched, but in reality, she is not. 

It first started out as some back and neck pain, but she was able to work through it. She continued her job, finished school, but soon after, it hit her with full force, spreading to her arms, legs — everywhere. 

Kendell now lives in a state of constant pain, with recurring flare-ups, which are a heightened level of pain. These can be triggered by food, exercise and more, and can last days or months. 

According to Kendell, fibromyalgia is different for each person. 

“It’s not exactly a science. It’s not just normalized across the board. If one thing is triggering for me, it could be totally fine for someone else. And even something that triggers me today, I could do it tomorrow and it could be fine. So that’s why it’s hard,” Kendell said. 

After Kendell graduated college and was diagnosed, a lot changed for her. Her active, free-spirited lifestyle turned and she could not be as independent anymore. Therefore, she often felt like a burden. 

“When it comes to my parents, I kind of felt like more of a burden to them. Because, you know, I left the house and I was by myself but now they have to support me and they have to kind of leave my room open at home,” Kendell said. 

But, she said, she has learned a lot. 

“People had to make adjustments for me. All the time. It’s hard. But these people want to help me. And they can, so I should let them,” Kendell said. 

According to Kendell, the pain takes much of her attention now. 

“So much of the time I feel like I’m with everyone, but my mind is like, ‘Oh my arm hurts right now.’ Or, ‘Oh, you should be smiling.’ A lot of the time I’m just so focused on keeping up the appearance that I just don’t have the time to think about that. So at the end, the energy is not there. I’m so tired all the time,” Kendell said.

Kendell’s mom, Becky Kendell, shares how hard it is to see her daughter sidelined.

“It breaks my heart that she has limits now. She wants to hang out with her friends but can’t because she is hurting. Seeing her be on the sidelines not because she wants to but because she has to is hard,” Becky Kendell said. 

Lora Kendell, second from left, with her family taking photos a year after she was diagnosed with Fibromyalgia. Kendell had never heard of the disease before her diagnosis. (Courtesy of Lora Kendell)

Despite these challenges Kendell has faced, poetry has been an outlet for her. She has found strength through her faith in God, who has provided her a way to express her hope and sadness, she said.

“He was able to just allow me to release through these poems. I think He gave it to me as an anchor to remind me of when I was at my lowest, in that moment, He still was there for me,” Kendell said. 

Lora Kendell wrote the poem “Become” to help convey and release her emotions about struggling with fibromyalgia. (Poem courtesy of Lora Kendell and made in Canva by Ashly Larkin)

Kendell’s dad, Travis Kendell, has also worked to help take the pain away through fun pastimes.

“As a parent with a child in chronic pain, knowing that I cannot take away their pain means my efforts are directed at giving them activities to distract from the pain and create and foster positive experiences,” Travis Kendell said. 

Kendell said she realizes everyone goes through trials no one else knows about and has found solace in helping others with their struggles. 

“I feel like I’ve been able to notice through this that everyone has something that they’re struggling with. And mine may be an invisible illness, but most people’s is an invisible something that no one else sees,” Kendell said. “So the way that I’m able to cope with my own stuff is just talk to people about their stuff … and we can just learn from each other,” Kendell said.  

Lora Kendell wants people to know just being there for her has made all the difference. 

“I guess just the biggest thing is knowing even though people can’t help cure it, or really do anything to take away the pain, is knowing that people care. They care enough to ask and to reach out and that buoys me up and is enough,” Kendell said.

 

 

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