Advocacy MS Research News2

The experience of stigma and concealment in Multiple Sclerosis

02.04.2025

By Guest Contributer Dr Rebecca Maguire 

As both an academic and a person living with multiples clerosis (MS), I am in the fortunate position of being able to conduct meaningful research which shines light on the impact that MS can have on people’s lives. A good example of this is a recent project I led which focused on the experience of stigma among people with MS (Maguire et al., 2024). In this study,* which was also designed with input from a further four people with MS, we wished to establish the extent to which people with MS experience stigma, what this involves, and the factors that are associated with stigma in MS. In addition, we were interested in exploring how experiences of stigma relate to people’s decisions to conceal their MS from others.

In brief, this study involved a survey in which participants were asked a number of questions on their background, health, wellbeing and stigma experiences, as well questions on how open they were about their MS and symptoms to others, and whether their approach to MS disclosure had changed over time. We were fortunate to receive responses from a diverse sample of 242 people with MS, who varied in age, gender, level of disability and years living with MS.

There are a number of interesting findings from this research, Firstly, we found that only 10% of our sample had never experienced stigma in relation to their MS, with 21% experiencing this often or always. Stigma came from a range of different sources, including from employers and colleagues (for those who were working), potential romantic partners (for those who were dating), family and friends, strangers, and even healthcare professionals. However, self-stigma was the most frequent source of stigma reported by our participants.

Responses suggest that the experience of stigma in MS can include struggles for recognition (e.g. feeling isolated or excluded by others), receiving unwanted inputs (e.g. feeling patronised or judged), as well as misunderstandings or misconceptions from others as to what MS actually involves (e.g. misunderstanding the nature of invisible or fluctuating symptoms in MS). A number of participants also described examples of work based discrimination or medical disregard as stigma, suggesting that there is a need to better educate employers and healthcare professionals on the impacts of MS.

While our results show that stigma is a common experience for people with MS, there may be certain factors that put some people more at risk than others. For example, we found that stigma is more likely in those who report poorer health and who have progressive MS (as opposed to relapsing remitting MS). We also found that women with MS, and those who find it more difficult to make ends meet are more likely to experience stigma. However, stigma was most strongly associated with feelings of loneliness, followed by lower self-efficacy (which can be defined as one’s confidence in managing MS).

Perhaps unsurprisingly, we also found associations between anticipated stigma and MS concealment. In other words, people who fear stigma from others are less likely to open up about their MS. When asked about whether their approach to MS disclosure had changed over time, a number of participants noted that they had become less open about their MS due to previous experiences of stigma. Some noted that they had to become more open for reasons outside of their control (e.g. experiencing more visible MS symptoms), however a number of others reported being more open due to an increased acceptance of MS themselves. From a personal perspective, this particular approach would echo my own experience. Also, while many participants reported negative experiences of MS disclosure, there were also a number of positive reports of MS disclosure among our sample. This included instances of feeling supported and experiencing empathy and inclusivity from others.

However, while many in our sample were open about their MS diagnosis to others, we found that levels of openness about specific MS symptoms varied. These findings suggest that some MS symptoms (e.g. sexual, bowel, bladder and cognitive symptoms) are more stigmatised that others (e.g. fatigue or mobility problems). This highlights the various challenges that may be encountered by people with MS on a daily basis, which may have implications for their ability to seek the supports they need.

Taken together, the findings of this research suggest a number of ways in which people with MS can be better supported in coping with their diagnosis. With regards to stigma, as noted in our paper “Interventions that increase self-efficacy and reduce feelings of loneliness offer one way in which stigma may be reduced. At a societal level, raising awareness of MS and ensuring that people with MS are not overlooked is also key in tackling stigma.” Hopefully, by highlighting these issues, a range of measures may be put in place to better support people with MS in dealing with the various consequences of this condition.