Thursday, 5 May 2016

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.

32 comments:

  1. Re "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".

    This woman may have what she thinks are valid reasons for not telling her children, but she is certainly not doing them any favours by hiding her MS. Keeping it secret is every bit as damaging to them as not teaching them how to cook or clean etc - hiding her MS just perpetuates the stigma that she seems to attach to having MS, and has the potential to seriously damage trust and other elements of her relationships with her children. As they move from being teenagers into young adults, they need to learn about the realities of "life" in order to develop into well rounded humans. They cannot be kept wrapped in cotton wool forever.

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    1. I totally agree.
      People want to raise their children, creating us, in a dome, as if they lived in a castle where nothing that disappointed and demonstrated the reality would happen.
      When these are then exposed to reality clash.
      This reminds me, at some Pointe, of the allegory of Plato's Cave. Diseases, "in general" don't "choose" gender, age, social status, race, they just come and we must be prepared for them, and whenever we face the reality of life, even if we exhaust valves for momentary (which is nonetheless sound)...

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  2. what is the point of that survey?

    How could the results help a political agenda?

    Why don't we focus on treating MS instead of treating the populace perception and reaction?

    Sorry about the rant - I filled the survey and I have been in the closet. But I am genuinely blinded of the purpose of this exercise!

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  3. Funnily enough, I'd been debating this for a while. I haven't kept it a secret as such however I've decided to do a fundraiser for the MS Trust this June so will definitely be 'out of the closet'. I always feel like I'm hiding something which is ridiculous as actually my health is not really of concern to most of my acquaintances. I wonder in part whether it's on my mind more as I have to remember to take Tecfidera twice a day, so never really get the chance to forget it.

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  4. My advice is to keep it in the closet for as long as possible. My wife was keen to tell everyone just after my diagnosis. Big mistake. I lost count of the number of times letters would arrive with a cutting from a newspaper with an MS cure of the week. No one ever asked me how was my job going or about my hobbies. I became the guy we know with MS. MS is no badge of honour. I've never mentioned it to my children who were very young when I was diagnosed. What's the point? Be as normal as you can be, keep it a secret for as long as you can and go for an induction therapy as soon as you are diagnosed. I've never got involved with MS societies, MS walks, MS fundraising. I was way more than MS before I got it and I want it to stay that way. My only real deficit is a stiff foot. If anyone notices on a hot summer's day I just say "motorbike accident from my teens", a complete lie, but so much better than "an incurable neurological disease which often leads to disability, loss of job, relationship breakdown, and 7-10 years off your life expectancy".

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    1. I agree also to some extent. Do I know the ins and outs of my friends and family members (such as cousins) medical history? No, it's not really my business.

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    2. Absolutely the right thing to do.I hope all the nosey parkers have stopped sending you stuff.

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    3. Spot on!

      If and when things really progress then it may be impossible to keep the MS hidden.
      When that happens some of the people who love me are going to be worse hit than I was/am. I want to delay that as long as possible.

      And yes - I want to keep away concerned friends
      (Let's not call them nosy parkers! They're trying to help)

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    4. I feel like I was forced to tell my mothers side of the family I have MS. When we celebrated my mothers 70th birthday some of my relatives looked quite sheepish at me when I saw them at the party. My mum had told them before the party that I was diagnosed. Some didn't know what to say to me and seemed stuck for words.

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  5. What is the benefit of disclosing your diagnosis before the symptoms warrant accommodations? When I was employed there were times when I needed to walk fairly long distances for work and would have to navigate several flights of stairs. Looking back, I should have informed a supervisor about my limitations, it would have made life easier and saved much unnecessary anxiety. I agree with anon 4:12:00, don't tell unless it impairs your quality of life then be honest and make the changes without a feeling of guilt.

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  6. Whether to reveal or not is an individual choice. All of us carry a lot of secrets. I kept several secrets from my parents while growing up, now I don't necessarily confide everything to my husband. It is an individual choice and most MS patients don't reveal their dignosis because it is a private matter. The whole world doesn't need to know my personal life. Please don't judge the woman who has decided not to tell her children about her disease. She knows what is best for her family and it is no one else's business.

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  7. Definitely keep it quiet. i told some people and work and last year needed a few weeks off work with bad fatigue during a relapse. Bounced straight back after these weeks much to everyone's surprised though I still get tired. This year's appraisal has said...'due to their condition they are emotionally labile. It was removed as there was no evidence to support it but that sort of ignorant stereotyping by management is a very dangerous thing and so demoralising when you work hard and are fully committed to your work and work hard.
    apologies if this has been received may times, always find posting here quite difficult.

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    1. This is exactly why I don't disclose at work. At 55, I am already the oldest person on my team in a large high tech company. Also female. I am no way going to give them another reason to think I don't measure up!

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    2. Exactly what have would happened to me.I was the only female on the senior management team and would have been an easy target for the men who hadn't got my job but were sure they should have done.

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  8. Out and proud :-)
    No option really as by the time I found out I had PPMS it was affecting my walking so it was pretty obvious to everyone that something was wrong.

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    1. "No option really" - pretty much my circumstances exactly. A key factor in whether to disclose or not seems to depends on how evident your MS is in relation to how much it has affected your functioning.

      When I got my diagnosis it was around 8 years after first symptoms appeared in my late 40s (hindsight is a wonderful thing!). At the time I was given my diagnosis a couple of years ago I was already EDSS 3+ and it was impossible to hide the disability that MS had already inflicted on my functioning (poor walking, bad balance, etc) so it was better to be up front about it. Even for quite some time before I was diagnosed my worsening functioning was becoming apparent to those who knew me. For quite a while I did have my suspicions of what might have been wrong with me but I did not let on to my aging and ill mother about the problems I was having because I know it would have worried her sick (she died about a year before I finally got a diagnosis). My worst problem was getting access to neurologists because of no apparent relapses - and this was despite living in a first world country.

      Would I disclose that I had MS if I was younger and had no obvious disabilities? I don't know that I would - it depends on so many factors which are different in people's lives as to what decisions each person makes. My employer has been brilliant, while they have legal obligations to me under the laws in my country, they have gone beyond that with the support they have given me. Not everyone is so lucky, and if you are much younger and have minimal or no obvious disability from your MS, ignorance in the general population about MS could have seriously negative employment repercussions, regardless of any anti-discrimination laws.

      However, I think that people should NOT feel they have to hide their MS out of "shame". MS is not a disease which is caused by choices PwMS have made, yet many people seem to have no problems grumbling about getting chronic diseases such as Type 2 diabetes which are so much more a result of poor lifestyle choices - e.g. obesity from bad food choices, lack of exercise etc.

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  9. 5 years ago when my problems were first investigated I was told that I had radiation myelopathy from cancer treatment that I had 25 years ago. I told everyone what I had. Just recentlty I travelled to London and saw one of the Barts neuros who says that I have MS. I have not told anyone other than my husband of the new diagnosis and that the neuros in my home city have got it wrong for so many years. Havent seen my original neuro yet to break the news to with my request to start a DMD - that will be interesting to say the least !!!

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  10. I am Asian and pretty disabled now. Can't hide it, no point. It's what it is. Deal with it, I guess.

    Prof G's observations about the British south Asian community is sort of right. Hindus perhaps perceive it as bad karma inflicted from past sins. Muslims may deem it as a sin of the family. Most, however, accept it. Our sense of community puts the rest of Britain to shame. We look out for each other, generally speaking. Hope that we always will.

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  11. I disclosed my MS diagnosis immediately, but it would have been stupid not to: I ended up in the hospital for a a week, then rehub for a month. I lost my mobility in this dramatic attack, there was no way to conceal it. However, I recovered from this attack, went back to work, and I feel it would have been better for my professional growth to conceal the diagnosis (even though all my colleagues are very supportive). I now do not bring up MS in casual conversations with friends and colleagues; it's not a secret, just not a point to discuss until necessary.

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  12. Keeping MS in the closet does us no favours. From the posts it looks like the majority are leading a normal life. That is why society only sees pwMS as disabled and not capable of holding down a job and nothing to contribute. I told my bosses immediately I had to, my boss used to bring me meals in hospital as the food was so rank. I worked for a large company and other colleagues were diagnosed after me, but my employer saw how hard we all worked not our disability. Attitudes will never change unless we do. On a personal level, I told a chap I had MS and he told me that it was a terrible thing to say and if I did have it I wouldn't be laughing and joking, I'd be miserable. There you go people's perceptions of us if we don't come out when we are doing fine.

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  13. I can understand not coming out of the closet when the media portray MS, even today, in such a negative way, and it is the way lay men and women, your employers and co-workers get their info. For instance, in this series of 'Elementary' the police chief got a love interest who was kept putting him off. She was working and behaved completely normal. However, she confessed to Joan Watson, Sherlock's side kick who was previously a doctor and a surgeon that she had MS and felt it better if they part now. Joan agreed as it's such a devastating disease, and even Sherlock who knows all about different cigarette ash didn't say 'what about the new treatments?' Needless to say, she's disappeared from the scene, presumably to her wheelchair and death in the not too distant future. No wonder you'd be wary about telling a new partner if you'd just watched that.

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    1. "Needless to say, she's disappeared from the scene, presumably to her wheelchair and death in the not too distant future."

      I know it's inappropriate but the industrial-strength sarcasm made me giggle a little bit!

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  14. THE SURVEY DIDN'T APPEAR ON MY SCREEN. COULD YOU RE-POST IT PLEASE?

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  15. I think there are two reasons for not telling people. One is down to your personality and how you interact with the world generally. The other is around how others will react and our fear of this. On this point, the more the public are aware of MS and not left in ignorance to make judgement, the less stigma should ensue. Therefore if an individual is naturally open, I would encourage discussion about MS status to educate the public. If we keep quiet we add to the ignorance and fear the consequences of others reactions.
    It is an individuals choice but one that should be made based upon personality and not out of fear.

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  16. I have checked in several times now and tried safari & firefox and 'allowed' cookies but no survey. There was a survey a few weeks ago that did not appear on my screen. Not sure what I need to change.

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    1. I am the same as you, I can't see a survey.

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    2. I couldn't see it until I logged in to the site and then it magically appeared.

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  17. I don't agree that hiding the MS diagnosis "is a sad indictment of our society and how we deal with chronic disease."

    My reasons are entirely personal - related to my temperament, personal history, and family situation.

    It's not because of any social stigma

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  18. You can't tell people cause they think MS is like ALS.

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    1. Exactly if we don't show people it isn't how can attitudes change.
      If pwMS only come out when they're at their worst they can't complain that employers, colleagues family and friends stereotype them.

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