“Oh it’s changed, it’s changed 10-fold”: concept of self in MS

  • Self-concept is the way people see themselves and is more likely to change in people with MS.
  • People with MS experienced changes in their lives and roles from diagnosis on, including changes in health, partner and family relationships, work and social life.
  • Some found their self-concept suffered in response to these changes, while others found MS gave them a more determined belief in themselves.

What determines concept of self and what challenges it?

“Self-concept” is the way that people see themselves, often related to what they see as their characteristic traits, such as being hardworking, smart, or outgoing.

A new study from the researchers at the University of Tasmania has examined self-concept in people with MS.

In the general population, most people establish a fairly stable concept of self, based on things like establishing a career, their intimate relationships, or having children – which usually occur in younger adulthood.

But if there are challenges to building these roles in the first place, or if there are disruptions to these roles once they are established, a person’s sense of self can be dramatically impacted.

What do we know about self-concept in MS?

MS brings challenge and disruption to traditional social roles. Research shows that people with MS are more likely to experience change in self-concept than the general population, but how this plays out in people’s lives has not been well described.

This study aimed to understand how people with MS experience change in self-concept to help health professionals provide better supports for the complex needs of living with MS.

What did the researchers investigate?

Sixteen people with MS participated in the study, with an introductory telephone conversation and questionnaire, and subsequently a detailed interview.

Participants represented a diversity of MS experience, with a range of ages (26-67 years), times since diagnosis (1-29 years), type of MS (relapsing remitting or progressive), work status (full/part-time employment/not employed/studying) and gender (10 female, 6 male).

The detailed interview covered the experience of self-concept change, within specific contexts (e.g. at home, work) and in general. Participants were asked what they considered to be the most important aspect of themselves and about meaningful life events, as well as changes in how they perform roles and the impacts of these on self-concept.

 What did the researchers find?

Three major themes were interwoven through the narratives. The first was how MS had changed their life, including changing roles and responsibilities and dealing with disease-related events.

The second theme was a changing concept of self with MS, and their current views of self.

The third was how their thoughts had changed with MS – the filter between how MS had changed life and how this had also changed the concept of self.

Changed Life

Many people identified particular events or instances that were defining moments for their self-concept.

The time of diagnosis was often referred to, such as for participant James who felt “like I was about to just melt away really, like the person I was, was gone now.”

Symptom escalation also impacted people such as participant Susan who became unable to walk: “I was sort of like, is this it for me now? Am I going to struggle to walk, for the rest of my life?”

Among changed roles, people described changed partner relationships, such as participant Jeffrey: “I don’t know what (my wife) thinks about me now… whether she thinks that I’m less of a person…”

The impact of MS on family relationships also contributed to self-concept; participant Diane experienced “..a lot of guilt….. cause, yeah, just the having to sleep lots and not being able to go and do a lot of what all the other parents do.”

Changes to self-concept also occurred through changed work roles or changed social life because of MS symptoms, such as bladder issues: for participant Daisy “I’ve always sort of been a social butterfly, but now I tend to pick and choose where I go to, it really varies.”

Changing Self

The impact of MS on self-concept was often widespread and profound. All participants referenced how much they thought MS had impacted their current perception of self, often by describing the magnitude, like participant Mary: “Oh it’s changed, it’s changed 10-fold.”

While some people experienced this impact across many aspects of self and life, others, such as participant Margaret, felt they had maintained a stable sense of self after diagnosis amidst the changes: “Yeah, like it’s a part of who I am, just not all of who I am.”

For some, MS was central to their identity and was negative, like participant Jeffery: “I just define myself now as physically disabled…Everything in my life revolves around that now.”

But for others such as William, MS fostered a more determined and resilient belief in themselves. They believed their strength came because of their MS, not in spite of it: “I’m a survivor, you know, that’s it. You keep getting knocked down, you keep getting back up again, that’s it”.

 Changing thoughts

Some people saw a clear need to adjust the things that were important to their sense of self, to accommodate their MS.

For Sharon, it was work: “I’m like, I’ve got to look after myself a little bit more and not work full-time because, obviously, I’m not the person that I want to be when I’m so focused on work.”

In trying to make sense of MS, some people found their sense of self suffered as they focussed on the limitations: “I just get stuck.. with this bloody illness and it’s like why? What did I do to get it? And I know that it’s not something that I personally have done, but it’s that whole “Why me?” thing that I’m sort of going through at the moment.” – Daisy.

But others recognised some positive impacts that MS had on their life, where diagnosis had meant a more positive outlook and appreciation for small, personal victories. These people tended to have a more positive self-concept: “So I guess I’ve tried to turn the negatives into positives now… So really, in a way MS is a good thing for me. Ok, it’s not a good thing but when I look back on my life it was shit for a long time until I got diagnosed.” – Robert.

What does this mean for people with MS?

People with MS often experience big and persistent changes in their daily life as a direct result of their disease, at a time when sense of self is often stabilising for the general population.

MS diagnosis, changes in health, and changed roles and responsibilities were major challenges to self-concept for people with MS.

As in other chronic illnesses, change in self-concept was experienced as a loss of past self for people with MS, as well as changes in specific areas at home and work.

MS was central to self-concept for many people but was not necessarily a negative influence, where some people saw themselves as stronger and more resilient because of their MS.

It is hoped that this new understanding will help the development of more targeted supports, especially during times or events likely to challenge self-concept.

If you need help with any of the issues raised in this article, please contact your MS health team or your State or Territory MS Society.

(Names of participants changed for privacy)

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“Oh it’s changed, it’s changed 10-fold”: concept of self in MS