Living with scleroderma can affect your sense of self, women say

Patients in interview study talk of the various life changes they have to confront by Marisa Wexler, MS | January 23, 2024

Living with scleroderma requires adapting to changes in a woman’s sense of self, but practicing gratitude and accepting change can help patients reclaim themselves, a study aiming for a “grounded theory” of identify management reports.

Its scientists said these findings may lay the groundwork for future studies aiming to develop interventions to help people with scleroderma hold on to their sense of self while navigating life with the progressive disease.
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The study, “Process of Maintaining Self in Individuals Living With Systemic Sclerosis: A Grounded Theory Study of American Women,” was published in the Western Journal of Nursing Research. ​

​‘Learning to listen to their bodies’ is a key part of life with scleroderma
Scleroderma, also called systemic sclerosis, is characterized by scarring that typically affects the skin and can affect other organs. Since scleroderma’s symptoms can limit a person’s function and visibly change their appearance, the disease can have profound effects on a person’s life and sense of self.

Professors of nursing at two Wisconsin universities interviewed 15 women with scleroderma with the goal of better understanding how the disease has changed their sense of their identity. The women ranged from 34 to 69 years old, and had been living with scleroderma for one to 15 years. The two researchers noted that they focused on women in this study because scleroderma affects women more commonly than men.

One major theme that emerged from the interviews was that living with scleroderma necessitates adapting to changes. For example, many patients reported that the disease has limited their physical abilities, with patients needing to make adjustments like taking a break midway when walking up a flight of stairs.

“Learning to listen to their bodies and coming to terms with how they were changing were important factors to master,” the researchers wrote.

Beyond affecting their functionality, the patients also reported that scleroderma negatively weighed on their sense of self, with many feeling that the disease has stopped them from living a “normal” life.

“I’ve lost a lot in my life. I feel like I’ve lost the opportunity to have the life that other people, other women my age would have,” said one of the interviewees, given the pseudonym Brenda.

“Losing one’s identity was such a big thing to the disease,” said another patient, Jessica. “It’s the emotional toll that I took when all of this happened . . . I lost identity. I lost who I was. Initially, scleroderma took away every part of my identity.”

Scleroderma-induced changes in physical appearance also can take a toll on patients’ sense of self.
“My nose is different, my lips, my cheekbones . . . When I look in the mirror, I don’t see me or the person I love . . . it’s not the face I grew up with,” said a patient dubbed Rebecca.

Despite these challenges, the women reported finding ways to hang on to or reclaim important aspects of their identity. Having a secure sense of one’s inner self, even when the physical body is changing, was reported to be helpful for many of them.

“I’d say that I have a pretty strong sense of myself inside and that means more to me than what I see on the outside … this helps me,” said a patient called Rachel.

Maintaining a positive attitude of gratitude also was said to be key in navigating life with scleroderma.

“I just appreciate the little things in life. I wake up and I’m happy just to get out of bed. I appreciate the day,” said a patient with the pseudonym Ruth. “Being grateful is amazing, and I want to help others with this disease. I have this disease, and I’m going to make the best of it. I still have so much left to offer others.”
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Among the study’s limitations, the team mentioned not collecting information on participants’ race and ethnicity, “which limited understanding the contribution of race and ethnicity in the process of identity management in individuals living with systemic sclerosis.”