Finding Gratitude through Self-Advocacy
Kirsten Whitecloud has been battling chronic illness in one form or another for 45 years. Despite that, she calls herself blessed, lucky, and loved.
Kirsten was first diagnosed with type 1 diabetes, a chronic autoimmune disease in which the pancreas produces little to no insulin, at age 7. That led to nerve pain, also known as neuropathy, in high school—pain that eventually got so bad she couldn’t sleep. She recently was diagnosed with fibromyalgia, after going undiagnosed for several years. She also had a rocky road to receiving an eventual kidney and pancreas transplant.
But when you talk to Kirsten, 52, she says she’s grateful.
“There were times when I was so sick, I felt like I didn’t know if I was alive or dead,” she says. “But my body just kept going. I felt like my body had its own will to live. I truly do believe attitude is a huge part of survival.”
The first battle
Kirsten’s first major obstacle started in high school, when she developed diabetic neuropathy, a condition that affects the nerves in the legs and feet. Kirsten experienced a sensation “like bees stinging my feet or an ice pick being rammed into my feet,” she recalls.
The pain was so bad that Kirsten couldn’t sleep at night and began falling asleep in her classes—unusual for her, a good student who enjoyed school. But Kirsten felt resigned to the issue and felt she would just have to learn to live with the pain.
“I was up all night crying,” Kirsten says, her voice choked with tears as she remembers how helpless she felt, even so many years later. She had an active childhood, growing up in a ski resort town in Idaho, and loved to ride mountain bikes and horses, hike, and ski, both downhill and cross-country. The idea that she would have to live with pain that could put a damper on her favorite things was overwhelming.
But then her mother, Stephanie Duchossois, stepped in, beginning a long and persistent battle of getting help for her daughter. Kirsten and her mother eventually traveled to a larger city, where they were able to find help when her symptoms baffled the doctors in their small town.
“I was too sick to even do anything about it,” Kirsten says. “To watch her advocate and say, ‘There has to be something that can be done here,’ and not resting until the doctors finally came up with some possibilities”—that showed Kirsten that doctors “don’t know our bodies better than we do.”
Her mother’s tenacious love for her daughter translated into a purpose: advocating for Kirsten when she couldn’t advocate for herself. And in watching her mother stand up for her, Kirsten learned how to speak up herself—and how to ask for help when she needed it.
Today, she enjoys her life in Syracuse, New York, remains connected to her Native heritage—she is Cherokee, and her husband is Lakota—and goes on axe-throwing adventures with her friends. She is grateful.
Leaning on her support system
Kirsten’s father, Dave Baldridge, also stepped in for her. After dealing with type 1 diabetes for years, Kirsten’s kidneys began failing. Two of her family members were a match: her father and her husband, Rene Whitecloud—with whom Kirsten says she has been “ecstatically in love” with for the last 25 years.
Rene “really wanted” to be Kirsten’s donor, she says—embodying the idea of “in sickness and in health”—but her dad’s kidney was a better match. So she underwent her first kidney transplant using Dave’s kidney in 2003.
But her body didn’t fully accept it. She had five major abdominal surgeries in six months while her surgeons tried to determine why the transplant didn’t work, and she had to go on dialysis for the next eight years. Surgeons gave the kidney back to her father, who Kirsten says wanted to care for the organ spiritually rather than having a part of his body disposed of as medical waste.
In addition to a new kidney, Kirsten also needed a new pancreas because of her diabetes. She missed two other opportunities to receive a new kidney and pancreas: In one instance, there wasn’t a surgeon available to perform the transplant, and in another, Kirsten was allergic to a substance the hospital was using to flush out her organs.
But the third time was the charm: The successful kidney and pancreas transplant she finally received in her 40s means she no longer has to take insulin or do daily blood sugar checks.
For Kirsten, it was another opportunity to feel grateful: “That feels like a personal victory,” she says.
Sticking up for herself
Even though Kirsten no longer deals with many symptoms of her diabetes, and her neuropathy symptoms have gotten better over time, she still experiences sharp stabbing pains in her feet several times a week.
She’s also developed fibromyalgia, which causes intense pain she describes as constant overall body aches.
She’s only had an official diagnosis for a few years, but her pain started much earlier. She told her primary care physician for a year and a half that she felt an all-over aching pain, and he dismissed her concerns, Kirsten says. He attributed it to osteoarthritis or general achiness that comes with age.
But Kirsten—keeping her mom’s example of self-advocacy in the back of her mind—kept pressing. She talked to a few people with fibromyalgia and finally, after she communicated more with the doctor who diagnosed her, her suspicion was validated.
Kirsten considers her fibromyalgia to be a moderate case—and in true Kirsten fashion, she’s thankful for that. She’s met other folks with severe cases of the disease who can’t hold down full-time jobs—something that would be especially upsetting for her. She works as an insurance agent for Bankers Life and as the intake coordinator for Catholic Charities in Syracuse, connecting adults to the organization’s case management program.
“I love both jobs and feel both jobs help people,” she says.
But she is “a little mad,” she says, that it took her so long to get an answer. And that’s the advice she’d give to anyone struggling with a chronic illness: Keep going.
“I have had multiple doctors tell me, in one form or another, that they really respect patients who will talk to them and challenge them a little bit and ask them questions,” she says. “It shows that the patient cares about their health.”
Self-advocacy becomes a life-saver
The self-advocacy mindset Kirsten has developed has paid off.
About four years ago, she had just started her intake coordinator job and was extra stressed. She had an unusual pain in her side and was rushed to the hospital, with doctors thinking her transplanted pancreas could be acting up.
When she arrived at the emergency room, doctors told her they were going to take a biopsy to diagnose the problem. Kirsten told them no. There was a gasp among the residents.
“Something in my gut just said ‘no,’” Kirsten says. “My mom reminded me later: I have a mesh layer in my abdomen [placed there as part of the pancreas transplant years earlier]. If they had tried to biopsy it, they probably would have shredded my pancreas.”
If Kirsten hadn’t spoken up, an honest mistake could have undone all of her progress. So, instead of the biopsy, she underwent three days of high-dose steroids. Her pain improved within a day or two, and her doctors said they couldn’t explain how quickly she’d recovered.
Kirsten has her intuition to thank for that.
“I love that I told them no,” she says. “I love the confidence. It was very empowering.”