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Chronically Ill, Chronically Busy

Video
Watch streaming video of Carolina Pineda

Carolina Pineda, Doctoral Student, McGill University

At the beginning of her presentation, Carolina Pineda said that she would probably tear up at a particular point.

Being both chronically ill and chronically busy, Pineda offered to describe how she manages her studies, jobs, and her physical condition.

She has systemic lupus erythematosus (SLE), an autoimmune disease that causes inflammation of the internal organs. During flare-ups, she sometimes has to be hospitalized. The challenge of coping with this condition is two-sided: she must deal with the condition, and with the reactions caused by the medication she takes to control it.

The resulting fatigue, and the threat of possible fatigue, causes her to immediately regret any commitment she makes. She inevitably wonders, “What if I am too tired or too sick to be there?” She used to go ahead and make commitments, all the same. “I wanted to let others believe that living with this condition is no big deal.” She has since come to realize that this condition does inevitably affect her. Her approach now is to deal with “what if” scenarios “as real, but not catastrophic.”

Now Pineda is working on her doctoral degree, and she accepts that she has to cope with these challenges, but does not want to accept the limitations her condition places on her. For example, the previous week she had to be hospitalized for two days during a flare-up. “I was not okay with that,” she said. All the same, she is at a stage where she can find practical accommodations to help her deal with the “what if” scenarios. She shared some that have been useful for her.

As a graduate student, she controls her daily schedule and is able to work from home. This allows her to nap when she is in pain.

Another benefit of graduate school is the close working relationships she has with her professors and peers. Because she is willing to share information about her condition with them, they understand the challenges she faces. She told her professors when a biopsy showed that she had inflammation that would have to be treated with prednisone. She knew the drug would seriously affect her. Prednisone is a “no fun medication”, a steroid that causes extreme anxiety and water retention in the face and body. “By telling my professors, I got the support I needed,” Pineda said.

She takes the same approach with her peers. Pineda confides in fellow students at the anthropology department where she studies and works. Her peers help out by returning library books for her and sharing notes.

Pineda admitted that she still sometimes feels uncomfortable telling her peers and professors about her chronic condition. However, she feels it is important that she does so. “My friend Fran says that by breaking the silence, I may be helping the next chronic person.”

“I no longer see my symptoms of chronic fatigue as evidence of weakness or vulnerability. I reframe them as radical political acts.”

Pineda then addressed financial realities. She must finance the cost of her studies and medication. There are grants, but these are very competitive and she has yet to find one that will cover all her expenses.

She therefore has three jobs, each of which contributes to her personal and professional goals. She is a teaching assistant in the anthropology department at McGill, works for the AQEIPS, and is a mentor at the McGill Office for Students with Disabilities. Since the topic of her doctorate is the experiences of people living with chronic conditions and disabilities, each of these jobs contributes to her research.

With 25 hours of work per week on top of her studies, Pineda has a busy schedule. Her health is her first priority. When she experiences more pain or fatigue than usual, she makes accommodations, changing her office hours or conducting meetings by phone.

While she has a lot on her plate, Pineda said that she manages through the support of her husband, the people in her life, and her pets. “The fact of my chronic illness doesn’t mean that I can’t have it all. There’s no harm in trying. And besides, I might just make it.”


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