ClinicSpeak: coming-out of the MS closet, or not

Have you ever concealed your diagnosis of MS? Let us know. #ClinicSpeak #MSResearch #MSBlog

"Are you in the MS closet? MS is a very stigmatizing disease and a lot of people with MS don't want their families, friends or colleagues to know they have MS. We noted that based on the level of traffic to this site very few people registered to become members. We found out from speaking to pwMS that they didn't want to register with the site as it would possibly label them publicly as having MS. As a result of this we took down the app for joining this site as a named member."

"We have not studied the phenomenon of concealment of the diagnosis of MS systemically, but it happens all the time. The study below highlights this issue. I have many anecdotes from my own practice regarding MS concealment. Some examples; I have one patient who is in her early 60s who has had MS for ~20 years and has never told her mother who is in her late 80's. She is worried that if her mother knew that she has MS it would 'kill her'. I have another patient who has a locked mini-fridge hidden in her cupboard to hide her interferon-beta syringes from her children, who are now teenagers. She can't bring herself to telling them. I an Asian patient who has been threatened by her parents to make sure she keeps her diagnosis secret. In some Asian communities having a diagnosis of MS not only stigmatises the individual but the whole family. In the UK we know there are at least two members of parliament who have MS; one is out of the MS closet and the other is not. Some pwMS are reluctant to disclose their MS as it may affect their prospects at work; e.g. will they be less likely to be hired or will it affect their chances of being promoted? MS is a disease of young people; do you tell your new partner that you have MS on the first date or do you conceal the diagnosis and only tell them when you think the time is right? The reasons for concealing your diagnosis of MS is long and varied, and is a sad indictment of our society and how we deal with chronic disease. Any suggestion of how we can help overcome this issue are welcome? If you have the time could you please complete this short survey. Thanks."

Cook et al. An Exploratory Investigation of Social Stigma and Concealment in Patients with Multiple Sclerosis. Int J MS Care. 201618(2):78-84. doi: 10.7224/1537-2073.2015-021.

OBJECTIVE: We conducted a preliminary investigation into dimensions of stigma and their relation to disease concealment in a sample of American adults living with multiple sclerosis (MS).

METHODS: Fifty-three adults with MS in the United States completed an online survey assessing anticipated, internalized, and isolation stigma, as well as concealment.

RESULTS: Responses to all the scales were relatively low, on average, but above scale minimums (P < .001). Ratings of isolation stigma and concealment were highest. Anticipated stigma strongly predicted concealment.

CONCLUSIONS: Many adults living with MS may be concerned that they will be the target of social stigma because of their illness. These concerns are associated with disease concealment. More research is needed to investigate how MS stigma and concealment may be independent contributors to health in patients with MS.

Labels: ,