Three Young People With Chronic Illness Talk About the Challenges They Face

 

Three people with an eye on the future talk about their innermost feelings and the fact that their lives may be interrupted at any time by their chronic illness. They recently shared their stories with The Guardian.

Olivia, age 25, manages to discuss her illness with a dry sense of humor that is captivating. Olivia explains the terror she felt when her doctor gave her a frightening example of a woman who died after missing a dose of her medication.

“All right. I get the message. I must take my meds,” Olivia thought.

At that moment Olivia remembered that the ride so far has not been smooth. She recalled her nighttime seizures, brain scans, and three days of tests hooked up to electrodes. Olivia was then told that she had nocturnal frontal lobe epilepsy.

She also feared a recurrence of hydrocephalus, which is an accumulation of fluid in the brain. Olivia underwent life-saving surgery in her last year at the university that reduced the cerebrospinal fluid around her brain.

Olivia was now at a point in her life where the hydrocephalus issue was resolved, and her epilepsy, or as she describes it her “after-dark neuron dance party” was managed through her medication. Still, she often has problems with anxiety, anger, and helplessness.

Olivia refers to herself and others as being in a “forever sick” club. She feels that the newest “members” seem to be able to manage their emotions better and handle the impact of having a chronic condition.

She mentioned that her doctor’s delivery of treatment guidelines using his dead patient as an example motivated her to quit her editor’s job. She said that the fact that she might drop dead at age 25 reminded her that it is time to make some changes in her life.

Olivia summed it up by saying that when she was told that she was going to die, reality came to the forefront. She explained that people can prioritize and change their thinking.

Chronic Illness Statistics

Her situation is not isolated. Australia’s Health and Welfare report that fifty percent of Australians are diagnosed with chronic conditions. That number becomes eighty percent over the age of sixty-five. About thirty to forty-five percent of Australians under the age of thirty-four have at least one chronic condition.

Susie, age 22 from Brisbane, Australia, talks about the obstacles she faced managing several chronic conditions. Although she had been seen by several doctors for problems with her heart, fatigue, and nausea, her doctors were unable to find the underlying cause of her symptoms.

It was not until after Susie graduated from high school that in 2016 she was diagnosed with postural orthostatic tachycardia syndrome or POTS. The disease affects heart rate, breathing, digestion, and blood flow.

The diagnosis was devastating. On the other hand, Susie said in a way it was liberating to finally learn why she had these symptoms. She explained that until then she felt like a “second-class human.”

Then in 2019, Susie was told that she had endometriosis, which caused her crippling pain and periodic confinement to her bed. An operation was needed to confirm a final diagnosis.

This weighed heavily on Susie as she said that it was not fair that she should have to prove that she is ill just because her illness is not visible to everyone. She also said that a person with a chronic illness may not be honest about their feelings or not express them to others.

Peter Baldwin, psychologist at the University of Victoria, suggested that an invisible illness can prompt someone to think that if they cannot see it, it does not exist. That attitude can cause a person with an invisible illness to think that they deserve the poor health or that perhaps they are exaggerating the severity of their illness.

The third person to contribute to this article is 32 year-old Shaun, a teacher who lives in Melbourne. Shaun has cystic fibrosis (CF) that was diagnosed when he was a senior at the university. He had planned to travel and was ready to begin his career.

Shaun said that after his diagnosed it seemed that his doctors were of the opinion that he would sit in a chair and wait out the rest of his life.

Shaun said that the outside world considers an ill person as a terrible friend for not always fulfilling friendship commitments. He said that ill people are a liability for business as their health cycles from feeling well to not being able to come to work for weeks.

He opined that a person’s workplace and friends should be central, but for an ill person, a balance is sometimes unattainable.

Shaun had CF symptoms in childhood but was not diagnosed until he was an adult. This is despite the fact that his sister died of CF at the age of thirteen.

He ignored the advice of his doctor and finished his degree at the university. He is now a relief teacher.

Shaun explained that he is angry that two children in the same family should have CF. He is also angry that to his mind his doctors did not understand his interests and aspirations. He felt that as a person he was reduced to “Shaun who has CF.”

Shaun is not interested in hearing stories about how CF patients should be grateful. He said when he learned about his illness he actually gained new strength. His mother calls it his “inner mongrel” that can come out to bite when needed.

Dr. Baldwin said that although there is fear and loneliness in dealing with chronic illness, people can meet the challenges and find meaning. He said that empathy is important because someone we know, whether at work or through friends, may be harboring a silent illness.


What are your thoughts about the emotions expressed by these three courageous people? Share your stories, thoughts, and hopes with the Patient Worthy community!

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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