Sunday, 8 May 2016

ClinicSpeak: how big is the MS closet?

Wow many more people with MS are concealing their diagnosis than I expected. #ClinicSpeak #MSBlog 

"The following are the preliminary result of our survey on the MS Closet. It is clear that MS remains a stigmatizing disease and people with MS tend to conceal the diagnosis from different parties. These results are an eye-opener for me as I didn't expect the MS closet to be so large and deep. As a society we really need to do something about this issue. For one I am going to add a new stop to my tube map of MS on the counselling line; I am considering naming it the 'stigma' or 'diagnostic concealment' stop."


29 comments:

  1. lol i'm honestly surprised that this is such a surprise. we live in a society that worships 'perfection' and judges 'weaknesses'. my partner's own family declared her attention seeking when she pointed out they hadn't seen her in a year since diagnosis. in my professional life i often advise clients to avoid disclosing a chronic illness to their employer. i read some survey by an ms society which found that some people who disclosed received ok treatment or better conditions following disclosure, but as i deal in my work life with all the stories without such happy outcomes, my advice is less optimistc (in the context of chronic non work related illnesses, not MS exclusively). in my experience employers (with exceptions of course) will often target those employees who may become a liability later on (when it will be very expensive to get rid of them due to length of service). why is it so surprising people facing an uncertain future and being judged by their loved ones let alone 'the society' would choose to control who knows about their illness?

    ReplyDelete
  2. I can't understand why you can't accept that such an issue is a private matter. As someone witt a MS I decide if I disclose that information to anyone else. At this point in time my privacy is important and I see no need to disclose the fact that I have MS. As a doctor I thought you'd understand the importance of patient privacy and confidentiality. I would rather you spent your time focusing on neuroprotection and repair, not updating your tube map (very clever, but of no benefit to me as a patient).

    ReplyDelete
    Replies
    1. This may be private matter, but failure to disclose can negate your employer's liability insurance. Evacuation from the building in an emergency can also impact on yours and your colleagues. Failure to disclose to the DVLA invalidates car insurance. Not mentioning an illness regardless of how minor for travel insurance can make the policy void.

      Delete
    2. I have SPMS (Secondary Progressive MS)and I do disclose my condition when I need to, ie DVLA etc, but I decide when and how that is done.I believe that it is my choice as to how and when this is done, in other words, I don't need to announce my condition to all and sundry in the national newspapers or shout it from the roof tops.
      I have a condition that is incurable, but not terminal, I manage my condition as best I can, but I will not be defined by my condition. I take control of my life, not MS. There is far more to me than a condition that I happen to have to live with - I adapt my life accordingly to enable me to live my life to the fullest. I believe that my mental attitude has a big impact on my health generally and I choose to be as positive as possible as that is good for me.

      Delete
    3. I'm speaking strictly for Australia and don't know about the position in other country.

      Failure to disclose does NOT of itself invalidate insurance (whether employer's workcover insurance or car insurance), it invalidates it if it is relevant to the issue and it's not disclosed. for workcover purposes, this means that my partner who walks unaided and has bladder issues does not have to disclose her condition to the employer as it does not affect her desk bound duties. equally with driving, though if she suddenly starts having double vision then she does has to disclose it. many people can choose to disclose their condition so that they don't have to rely on a retrospective evaluation of whether the condition had to be disclosed. but in australia, an employee whose medical issues aren't affecting their duties, does not have to disclose their issues to employer: if there is an evacuation and you fall because you have MS you haven't disclosed and sustain an injury, you will still be covered by workcover.

      this website explains the situation in Victoria, each country will have its own equivalent. http://www.humanrightscommission.vic.gov.au/index.php/workers-rights/disclosing-disability

      Delete
  3. I suppose partial disclosure could help me if I didn't want to disclose my RRMS. Several of my colleagues at my previous work said they had problems with their spine/back so required new/special chairs to help them sit at a desk all day. The organisation got them new special office chairs.

    I could say I have a spine and neck injury or problem - lesions in spine are an injury. I don't think people would judge me on this but it would make them aware my spine and neck is not 100% well.

    ReplyDelete
    Replies
    1. you don't actually have to disclose that you have a chronic illness caused by your immune system attacking your CNS... it's ok to tell the employer that you have some issues which affect your xyz (eg back), without providing more details (unless the issues are directly related to your ability to perform your duties). usually employers can be appeased with the 'if you want me to get a doc's note regarding any work modifications can definitively do that' - but you don't actually have to make up illnesses to tell your employer you have that would explain whatever symptom you have. partial disclosure also allows you to avoid lying. employers of people who have sedentary computer/chair jobs will usually cater to 'back problem requests' pretty cheerily as it is cheaper to buy a $600 chair than pay the insurance premiums on workcover claim for workplace back injuries caused by improper work posture or exacberation of an existing issue.

      Delete
  4. Prof G,

    You've got PhDs than I've hot dinners, but you wouldn't pass a GCSE in common sense. If you were diagnosed with MS, would you really want to broadcast the news to the world and his wife? You'd become The Neuro with MS, rather than Prof G, leading MS expert. Your invites to conferences in exotic places would dry as as organised worried that the travel might be too fatiguing. Broadcasting this personal / private issue does not provide any benefit to the patient. I'm surprised you can't see that. You view it as winning the lottery!

    ReplyDelete
    Replies
    1. A bit OTT because Prof G is acting with the best intentions but the point is well made.

      Delete
  5. I knew from day one that I would conceal because I knew how I would react if I'd found that a colleague had MS. Not that I would think less of them or pity them, just that they would immediately become 'Mrs X with MS'. Pathetic, judgemental, true.

    ReplyDelete
  6. BTW, I think 'diagnostic concealment' should be your description. Calling it 'stigma' defines it as such!!

    ReplyDelete
  7. Covering your own backs daily will all be exposed

    ReplyDelete
  8. To all the people who've said they conceal their MS because they believe they will be judged badly - ie pitied, forced out of work etc - would you like to be open about it ?

    If you answer Yes then think how the change in society's attitude will come about. If "regular" people only experience MS because of seeing someone like Debbie Purdy on the news (someone very disabled and wanting the right to die) it's not surprising they have a negative and warped view of what the reality of life is for the thousands of PwMS who were diagnosed early and are on an effective treatment.

    The more "normal" PwMS who are prepared to put their head above parapet then the more likely we get rid of the misperceptions and prejudice.

    Sounds unrealistic and delusional ?

    Thirty years ago I realised I was gay. There was no way then I felt I could tell my colleagues / employer / certain members of my family. The rise of HIV and Aids added to the already very negative view of homosexuality. The government, media and society were extremely hostile. Then I saw other regular people coming out of the closet and I gradually took courage from them.

    Society has changed so much over the past two decades - don't let fear rule your life.

    ReplyDelete
    Replies
    1. Beautifully said. You're an inspiration.

      Delete
    2. I totally agree with you. Attitudes will never change if pwMs stay in the closet. Some of them might be surprised at the way people respect you for carrying on. It's an insult to friends and families to pre judge their reaction. It also helps to educate to come out. Can't believe the rudeness to Prof G on this subject.

      Delete
    3. i'm gay and i disagree. the gay movement has been huge in the last 20 years or so and its organisation has in part led to the strides in gay equality over the last decade. MS people don't have the luxury of a big movement behind them. expecting people with MS to change the world at their detriment is not the same as being gay and coming out of the closet. I'm not sure why Prof G is "rude on the subject" - what's rude about it.

      Delete
    4. I'm saying why are the posters on this blog being so rude towards Prof G. The gay movement relied on people coming together by individuals speaking out. Homosexuality used to be illegal and it would have been more difficult to change peoples attitudes.y When I came out there was no disability discrimination act. You have no idea how many pwMS are suffering in silence, because they haven't come out. I did and I made the bosses sit up and listen.

      Delete
    5. sorry but the gay issue and the ms issue are separate.

      before you disclosed you were gay, you were discriminated against by the society but, other than perhaps having 'gayness' spread through the workforce, your relationship and sexual issues were of no concern to your employer (ie. your gayness wouldn't kill your brain off over the next few years making you a potential liability to the workplace).

      Nothing says "please hire me or please don't terminate my position" to an employer, like telling the employer you have a chronic incurable illness which is slowly killing off your brain. There are reasonable employers out there and I've even heard of wonderfully supportive employers. But there are many bean counter employers too and all they see when someone has a chronic illness is what they imagine will be lost $$$$$$.

      My partner has not disclosed her illness to her employer, though some of her colleagues know (has it reached the employer yet? lol). I'm not too worried about my partner's position cos there would be hell to pay if they started the 'squeeze out' process - I eat those things for breakfast in my work life. But the effect of disclosure gone wrong and squeezing out of employees on vulnerable people is huge and often stays with them, it's not like it's showered away.

      I personally feel people with MS have enough on their plate without adding to their issues.

      Don't misunderstand me - in response to your post, I say good on you and good on your achievement. But the expectation that other people with MS should do the same is a bit tough.

      PS. I agree re the rudeness to Prof G, but I think people with MS sometimes feel so stripped of control over their own life that they get upset at the tiniest suggestions that look like someone is telling them what to do. Heck, I don't have MS and I'm ridiculously protective of my partner's self determination and autonomy, for as long as she wants self determination and autonomy.

      Delete
  9. I've had some discussions over the past 6-7 months about disclosure with a variety of people. I was actually somewhat surprised to see it get attention here until just scant weeks back what Barts began to probe "life" issues of MS .vs. the more clinical.

    As I noted in a differing post it is as foundational as "Brain Health Matters" towards best long term outcomes for people and families who endure MS.

    To disclose or not is a small part of that foundation as well. The foundational aspects of interfacing clinical care and research towards the life aspects of MS unseen.

    Lets take for example a project called iConquerMS who has been operating to collect patient information. The goal is "Big Data" so as there is a database that researchers can utilize in a variety of ways.

    They have had issues getting that disclosure to occur and there are numerous reasons many in which they just do not seem understand. In this case its everything from trust to simple "no" because people with MS already have loss of life control. Thus asking them to give data that they can simply say "no" to happens. Trust is just hammered in the MS global landscape and make no mistake about it there are both valid and invalid reasons.

    People who endure MS and clinicians state, "No person can understand MS unless they have it". I have MS, I know this to be true. But I also know it to be true that no person can understand what its like to have cancer unless they have had cancer in all of its nasty forms. No person can understand what its like to have a heart attack unless they have had one or bypass surgery.

    MS is chronic and ongoing, so is congestive heart failure or a life of degenerative back disease.

    Point being, in MS the landscape globally in professional circles has surrounded the clinical realms much more so than the personal realms.

    I am delighted to see Barts taking a look at all of this and it is my fondest hope that protocols arise from it that are as foundational as Brain Health Matters. That in time said protocols are adopted by the frontline of care for people who endure MS.

    ReplyDelete
  10. I'll bet the MS closet is even bigger than Ivana Trump's closet.

    ReplyDelete
  11. And pwMS are complaining they have no access to DMTs. To the decision makers there isn't a problem.

    ReplyDelete
    Replies
    1. Yes, the experience of people with MS differs. Some people are struggling to access DMTs, while others are getting DMTs thrown at them and are not wanting them.... Just like there are starving people in Africa while privileged people in Western countries throw food away.

      Delete
  12. Re "why are the posters on this blog being so rude towards Prof G"

    Because Prof G is being judgmental and paternalistic.
    He seems think he knows better than us what's better for us and our families and friends

    ReplyDelete
    Replies
    1. Interesting yes? But there is more. All of you have noticed I hope that now the patient associations are all saying, "Managing MS requires a personalized regimen."

      There is more. Whats happening? The new generation of DMT's are staving off relapses. Thats good news! On the other side of the coin are insurers. We all know the word on the streets about the high price of DMT's. Even with the rebate oriented mechanisms between pharma and insurers these are still very expensive medications. Or, the bid systems some national care institutions have in place... still expensive. But that is only part of the picture my friends.

      For insurers be they national, state or private the statistical facets of DMT's are coming to play. Insurance business is a statistical business. A gamble based on statistics and more. The DMT's efficacy results to insurers as immediate expense for the drugs, longer term expense as the drugs work .vs. people declining towards death. It also means to them longer term of disability. The drugs are not reversing damage.

      Thus when they statistically view long term they see red ink. Much red ink.

      Proper entry into MS towards quality of life and long term best outcomes is thus imperative. Its imperative towards costing for insurers and really it makes a whole lot of sense for patients and families. After all, its why we are taking DMT's. Its why we do "Walk MS", donate towards help and research. Its all about curing MS and until that cure comes having best quality of life we can have.

      As I have explained it to Prof. G and other researchers, clinicians across a broad range of disciplines. Brain Health Matters is one of the most important MS documents to come along. Period. Saving as many nerve cells as possible from point of diagnosis. It makes complete sense right?

      I mean, 30 years ago, 50 years ago makes sense. But until only recently have drugs come to be that actually are appearing to do so. Yet for all those years past no FORMAL protocol's existed. Brain Health Matters is receiving wide adoption globally as its right on the money per se.

      WHO made this happen?

      Right here... All of us, Prof. G, some other notable neurologist/researchers and most assuredly input from the BARTS folks and the MouseDoc's. This is no small feat. Its big.

      But it is only part of the picture towards quality of life, best long term outcomes, avoidance of perhaps risk pool based insurance for people with MS.

      The other side of the street is "LIFE WITH MS". Entry and existing and these are QUITE different. A new entry into MS is far more easily assessed and helped along that path of best outcomes than someone who's already lived with MS 5 years, 10 years, 20 years.

      We (MS Unites) have been working on trying to come up with a reasoned entry protocol. But know what? Even if its complete, "All of this makes sense start to finish" our odds of getting it adopted by the medical community, insurers is 1 in a million.

      We dont have the credentials, we dont have the clout. In fact, its out hope that if we can ever get it completed (this is EVER EVER so complex) that we can get some key folks to just take it. Run with it.

      My fiance' is a software engineer, a good one, his best skill is reverse engineering. Towards this "entry protocol" he'd be first to tell you, "Dang! This is SO complex".

      Why so complex? Gender, age, disability levels, disability types, each individuals life. Trying to come up with a granular question, response and thus roadmap towards proper interventions is REALLY hard. So many variables at play.

      Continued...

      Delete
    2. Recently we were exposed to Ohio Health. A not for profit hospital system here in the USA in the state of Ohio. They built a state of the art MS Center full service. They DO engage entry protocols but no formal protocol system or suggested system in the USA more or less globally exists.

      That said, NOW is also the time it needs to get in place. Just as Brain Health Matters is a foundational document towards fast movement to protect the patients brain and central nervous system, "MS Life Matters" (as I now call it) is the other side of the Living with MS street and it is just as foundational.

      The fact that Barts, the people who in large part are responsible for Brain Health Matters are engaging in these questions such as "Coming out of the closet?" means it IS being looked at.

      Why begin with disclosure? Because it us foundational.

      Do the majority of people who endure MS disclose it?

      Prof. G and staff already know the answer. But they do not know a proportion.

      Saying "We know" and saying, "We polled and 3 out of 5 do not" is quite different.

      It is a foundational poll in that it leads to other data needed. For example, "Why do they not disclose?"... That may lead to more polls, "What symptoms do you associate with not wishing to disclose?" or "What aspects of life affect your willingness to disclose or not?"

      Its all foundational stuff that needs real numbers. Real numbers are needed because that is HOW protocols can begin to be looked at. How that data and indeed much more can then be applied towards foundational, "MS Life Matters" protocols to come to be.

      Again, perhaps its me. I've pushed on this stuff hard in many places.

      It is my fondest hope and prayers that Team "Barts", Prof. G, MouseDoc, MouseDoc2 and all the staff work towards protocols that can be adopted globally towards life assessments.

      We as MS patients and for those who each and every single day get a new diagnosis need this.

      Thus before casting stones perhaps we should all be asking, "What can we do to help?"

      In my case I've stated, whatever we can do we will do.

      We can all make a difference but we cannot do it alone.

      Team Barts made a difference in Brain Health Matters which is now being widely endorsed globally in the MS medical community. Understand something folks, all of you made a difference. Team Barts and you have changed the world.

      How did you change it as a Barts MS Blog reader or poster?

      This website, its interface between you, other patients and families along with researchers, clinicians globally have helped create a presence in the world of MS that is heard. Thats HUGE.

      If you were to ask my fiance' who is a web expert of sorts he'd tell you, "Its pretty much unheard of that a blog is able to accomplish what Barts MS Blog has". And thats 110% true.

      It has happened because YOU the people who endure MS are activated here. Its happened because in both success and unexpected results (which some deem failure and its not) Team Barts never give up. Never do what OH SO many other MS entities do, just let the tide roll. Not ALL but most. Australia MS Research comes to mind, they dont roll with the tide either.

      Point of all this post being... WE and Team Barts have in fact changed the world of MS as Brain Health Time Matters would probably never have come to pass if this blog did not exist.

      Instead of bashing away and/or making presumptions or assumptions we should be saying, "Congratulations all of us... We have changed the world. We now know we can and we will. Whats next?"

      Delete
    3. I disagree on what people with MS "should" be doing. I disagree with much of anything that begins or ends with a statement on what any other person "should" be doing.

      I personally don't share the view that Prof G's entry is rude, though I am surprised at the level of his surprise re the MS closet, particularly in the context of employment or general public matters. But I understand why people with MS may be a bit touchy about the level of control they have about their own life and who are constantly being told what they 'should' do are a bit angry. I doubt they're really that angry at Prof G himself, but I understand how they have come to view this entry as rude - even though I disagree with them. They've taken an extra step and drawn conclusions from Prof G's statement below to the effect that Prof G is telling them what to do or what the 'right' thing to do it. "The following are the preliminary result of our survey on the MS Closet. It is clear that MS remains a stigmatizing disease and people with MS tend to conceal the diagnosis from different parties. These results are an eye-opener for me as I didn't expect the MS closet to be so large and deep. As a society we really need to do something about this issue. For one I am going to add a new stop to my tube map of MS on the counselling line; I am considering naming it the 'stigma' or 'diagnostic concealment' stop."

      It's exactly what I did to your previous statement that patients don't understand doctors' work pressures - and I did it consciously and purposefully. In my view, it's natural that patients with MS will experience anger and that they will take that anger out on those in front of them (their neuros, Prof G, etc) and as tough as it may be for their neuros or Prof G, they're in a better position to deal with it then the person's family or friends.

      With that in mind, how does it really help anyone to say people with MS to be telling them what they "should" do, say and think, let alone feel?

      Bojana

      Delete
    4. I'm a professional in my work life and my hourly rate is $450. I have clients who mortgage their homes to pay me. Sometimes they don't get what they want and are angry at perceived injustices. Sometimes they direct that anger at me because I'm the face of the injustices they experienced (it wasn't actions that led to the loss, it's often how the system works and I explain this to them before they mortgage their homes to pay me). When they direct their anger at me and I can't calm them down on the spot, I tell them that I understand they're angry and can see why they are angry - but that the convo is going nowhere and we should have it a little bit later when it may be more productive. I don't start calling them names and telling them they're irrational, idiots or in lala land or what they should be expressing, because it won't help anyone, least of all them. I also have clients who believe they know the area of my expertise better than I do. When I listen to them and compare it to what they've read about the issues on generalist sites, I can often see how they came to irrational conclusions that they have and can address those point by point. I know that I have all the time in the world to do this (even if I do have to work 12 hour days to make the time) because they pay me for my time by the hour, in 6 minute increments. I know that doctors get paid differently and those in public practice do not get paid by the hour. But that doesn't mean name calling or 'you should say do and feel as follows' has a place in their practices (or that the MS society should be going down that path).

      PS. I think you should take the xyz treatment for your MS because.... is not of the same category as 'you should say you're grateful because...'

      Delete
  13. lol if it is actually of any interest, than i need to clarify the wording i used in my post:

    but in australia, an employee whose medical issues aren't affecting their duties, does not have to disclose their issues to employer: if there is an evacuation and you fall AND you have MS, unless you have serious balance issues and should be walking with aids, you will still be covered by workcover.

    if you fall because you have MS which is affecting your safety while you walk then chances are you will lose the benefit of workcover or you will lose on a portion of benefits that you may otherwise have received. However, even then you don't have to disclose that you have MS - it's ok to disclose that you have a a problem which affects your ability to walk or your balance or whatever the case may be.

    I haven't researched the case law in any detail in the context of MS, but I suspect if there is an evacuation and you right at that moment develop a relapse or symptom you've never had before that significantly affects your ability to walk and you fall during an evacuation you're in a bit of a grey area because I doubt those types of cases have made it yet before the Courts in Australia. While there is no research on the how often this happens, I suspect in reality it doesn't happen all that often.

    Travel insurance is a bit more dependent on policy wording than workcover. If you lose a bag and didn't disclose your MS the reality is that the insurer won't be able to reject your claim (it won't know you have MS and even if it found out through sneaky means, a dispute with the ombudsman should sort the situation out). I have found travel insurance that insures for MS without the need for medical and other reports, we have always disclosed MS to the travel insurer. But disclosing to a travel insurer doesn't involve the same privacy issues as disclosing to employer.

    Bojana

    ReplyDelete

Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.