If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you


No announcement yet.

To dislose or not


About the Author


Jall Find out more about Jall
  • Filter
  • Time
  • Show
Clear All
new posts

  • To dislose or not

    A recent post raised the question of whether someone with HCM should disclose that fact to their employer or not. Several people responded no. My gut reaction was yes, but partially so that the employee could gain the protection of the ADA--an employer should make reasonable accomodations to someone with a disability, but can only do so if they know of the disability. Because I am on the management committee of my company, my perspective might be different than others.

    The broader question is whether you disclose your HCM status to friends. Having been just recently diagnosed, my limited expierence is that several persons that I have told now tend to treat me like I was just released from a leper colony. Perhaps they subconsciously confuse "genetic" with communicable. Consequently, I don't tell anyone except on a very need to know basis. Curious as to anyone else's perspective.

    Diagnosed with unobstructed HCM in 2004 after a bad experience playing tennis
    Graduated to obstructed HCM by Dec, 2008.

    Life outside of HCM: Law, Photography, Tennis, Music, raising kids and camping

  • #2
    I tell anyone who is interested. I don't blab it out to everyone, but if it comes up, I will talk about it. But that is my personality. I share more about myself than other people are comfortable with. My husband is much more private than I am, and he shares many fewer details with others. I think it depends on what you are comfortable with.

    I also have told people at work, because I have an ICD. I want people to know what to do if I black out while at work. I have just been in the hospital to have my generator changed, and a med change, so I had to explain my hospitalization, plus, I feel better having people know something about what is going on with me should something terrible happen.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


    • #3
      I, personally, have informed my boss and a few others at work know of my condition. I had been hospitalized a few times last year and felt that I needed to inform them of my condition. I was at work when I was brought to the ER last time. I have been able to make it to work a few days when I was in Afib...it wasn't that bad that I had to stay home..but my boss is fully aware of what I have and that I need to park in the handicap spot on those days when I feel worse. People may have various reasons as to why they do not want to inform their employer. Maybe their afraid of losing their job? That would be discrimination if that happened. On a side note...I have to tell you what a ""friend of mine said to me a few months ago when I was applying for another job in th school district (as my previous job was through a grant and didn't know if I would be coming back and needed to carry the health benefits so I had to apply for something) -- I was anxiously awaiting a call for an interview and she said, "Cynth, do you think you haven't heard because that you have been in and out last year (hospital) and they want someone they can depend on more?? If it were me that had to choose between two qualified candidates (she is in a managerial position at a big company) and one is occasionally out hospitalized and the other in good health, I would have to hire the one in good health".....I haven't spoken to her since...nice thing to say, huh?? My employer has been very supportive and understanding the times I had to be admitted into the hospital. Just my two cents....
      \"It is not length of life, but depth of life.\"

      Ralph Waldo Emerson


      • #4
        The information is given out on a "need to know" basis. and most people do not need to know.

        laws, schmaws...they'll find a way to get rid of you if they want to...and make up something legal as an excuse, ADA be darned. Unless you absolutely need some accomodation, I wouldn't say anything to an employer.

        HCM ended my career, only because there was no practical way for me to hide it. the ADA will not protect you, if you could be a danger to others.
        dx'd HCM @age24, (1989) |Gene + |no family history


        • #5
          I started back to work 1 year post-myectomy and had to decide whether to tell my employer about my HCM. I waited a few weeks, feeling out the 'climate' of things and then disclosed it first only to my employer. Here were my thoughts:

          - The company I work for is very 'by the book' when it comes to accomadating those with medical needs.
          - It didn't appear that it would impact my work load.
          - I told my employer that the longer I worked here the greater the chance I might at some point not be able to be at work one day, or need to leave early, due to my heart condition. I didn't want it to be a surprise if my husband called and said to her, "Lynn won't be in because she spent the night at the ER".
          - In my work I do have need of moving/lifting heavy items so telling my employer makes it easier to say, "I'll need to call someone else to assist" as the company is required to make those necessary adjustments for those who cannot do so for themselves.

          As for telling co-workers and friends: for me I used to mind telling others, then I decided I would mention it if the situation came up. But that is my personal comfort level with things. Here is my justification in telling others.

          - Then they don't have expectations about me acting or not acting in certain situations and then I'm left trying to 'justify' or 'explain' myself - i.e. at work we have team building outings that often involve things like, volleyball, etc. and I'm not going to play. Or to a friend, don't expect me to jump at the offer to walk around in the sun and humidity for 2 hours...
          - In telling friends I am reminded that most folks have their own 'battle' or personal 'struggle' and are supportive and understanding. My battle just involves the heart.
          - By my telling others that I have HCM I hope that I am helping to 'get the word' out about it and promote awareness; making myself a resource to others so that this one day becomes a commonly known and recognized disease.
          - And finally, I live with this disease day in and day out. If someone can't handle seeing my physical, and sometimes emotional, limitations & scars that accompany it on a short-term basis...well, then I guess they've not yet faced anything the likes of what I have and I'm happy they are blessed with good health but I can't help them be comfortable with me.

          I hope this can be used as a barometer for others and where they fall out in their respective comfort zones. I certainly do not mean for it to sound as though I'm saying everyone else has to feel the same. It's just my point of view for me and only me.

          All the best!!
          Lynn Stewart
          HOCM 4/2002
          Cleveland Myectomy Crew 8/2002


          • #6
            It is very tricky when it comes to disclosing your illness. I just went through the interview process myself in the medical field. I tried to feel the interviewer out first. But honestly I felt uncomfortable hiding it. I felt as if I were lying. The biggest question that came was why did you leave your last position. I was honest and stated " I have a genetic heart condition that limited my lifting". I also didn't want my employer to feel like she had been cheated when she hired me. I believe in "What you see is what you get". I also believe this helped me a great deal because. Last Monday after work I sat in the car and promptly passed out. One of my co-workers saw the car and checked on me. Thank goodness it was only BP related but if they had not known I had some problems well, I might not be writing this post.

            I've also found to be very open with my professors nine times out of ten when they know what you're going through just to be in their class they are more than willing to help you out.

            And I also know what it's like to be black balled because of a condition. Those of you that know me know about my trials and tribulations at Disney. These people turned down my request for time off to get my AICD implanted. So even after that mess I say YES to letting your employer knowing about your condition.

            Mary S.


            • #7
              Like Mary said, it is a very 'tricky' path. I disclosed my HCM to my employers and lost my job. Not only that, but they fought me on my unemployment to boot. Of course every employer's practices are different and definitely some are more unscrupulous than others, but it is pretty much up to you to decide who to disclose this information to and why. If it doesn't effect your job, then there's no need to tell them you have HCM.

              Take care,

              "Some days you're the dog... some days you're the hydrant."


              • #8
                OK – I’ve got to jump in here,

                When I was still working I was not yet diagnosed, but I was having a lot of problems with symptoms. The bank I worked for was bought by another bank, and there was to be a lay-off of a thousand to fifteen hundred workers in my department – IT (Information Technology.)

                Anyway, I had become fed up with all the screw up’s I had with the system I worked on – and all the midnight calls to come back to work – that I started cleaning up the mess on my own (Unauthorized since they couldn’t figure out that it paid for that work to be done.) With the change-over all new work had been curtailed, but we still had to meet state and federal requirements – work that nine of the twelve of us were doing. As I started cleaning up the system more and more people were switched to other work, until I was doing it all by myself. By this time the system was running so well that midnight calls became rare, and were limited to – “Which program blew? OK, then call such and such department and tell them their feed was bad. If they don’t get it cleaned up by X time, run without it, and we will catch it up tomorrow. Good night.”

                So now I was running the department myself, but was having a lot of medical problems. I kept telling everyone that would listen that I wanted to be included in the lay-off. (I would get two more years of service added to my retirement package [an additional 4% of my salary] plus a week’s severance pay for each year of service [12] plus another six months of basic severance – a tidy sum. I even went to the vice president in charge of the division to plead my case.

                The upshot was; 1- I was told I was too valuable to be laid off (Even though I told them I could not work anymore, and would be leaving in any case.) 2- They had noticed my slowing down on the job, and I’d better get back to working the way I used to. 3- They were only laying off people whose job had ended (But I saw a lot of people being laid off and others being transferred to fill their positions.) Anyway, there was no way I could get them to lay me off and had to retire early – without the severance package. I guess that’s the price you pay for being too good on the job.

                With my wife getting laid off due to her epilepsy, we went to a meeting held by the ADA and heard of a number of cases where people were laid off (summarily dismissed) because of their disability, and there was a group affiliated with the ADA that was taking their cases. I would advise everyone to check the current law that makes up the ADA requirements, and make sure you qualify (with the documentation plus a letter from your doctor stating your condition) before making any move toward notification of your boss – and if and when you do notify them – make sure a copy goes to personnel for inclusion into your jacket. Bosses can be great people, with a fine understanding – but you never know when they will get promoted or move on, and you wind up with someone who wants you and your condition out - and couldn’t care less about how they accomplish it. In other words, make sure of your position before you find yourself out on a limb.


                • #9
                  I noticed in your profile that you are an attorney. I expect you already know more about what is on the books than any of us. What the rules are and what actually occurs can be two different things however. Why open that door?

                  My experience has been that the layman is not interested in the specifics of our disease and certainly will not sit down and research it like everyone visiting this site is doing. It is also common for those on the “outside” to view this particular heart problem, with their limited information, as something self-inflicted. Specifically too much booze or too many illegal drugs – after all, isn’t that what causes an enlarged heart??

                  I was listening to talk radio in Boston just yesterday, and one commentator was jokingly predicting the premature death of a celebrity before she turns 30. “She parties so much her heart will enlarge and finally just explode before she turns 30.”

                  If you are currently suffering disabling symptoms the approach is probably going to be different than those of us that are less symptomatic. Of course when you disappear because of a trip to the hospital its going to be very difficult keeping all knowledge of the condition quiet.
                  • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                  • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                  • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                  • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                  • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                  • 2011: Brigham & Women’s - Medtronic ICD implant


                  • #10
                    Thanks for all the different perspectives on employer responses. I suppose all employers are different and have to dealt with on a case by case basis. My firm, which employs about 200 persons, has bent over backwards to get two persons through chemotherapy and let one employee suffering the effects of being a lifelong smoker, and who could make work about one out of every two days, make it all the way to retirement. For our company, drumming someone out for a physical condition is pretty much inconcievable, even though we have had to change group health carriers almost every year because of having a poor expierence factor.

                    Another note on the ADA. It only requires an employer to make a reasonable accomodation if one is possible. You can read the different posts in this website and quickly come to the conclusion that some persons symptoms could never be accomodated, while others might well be accomodated, all depending on the job at issue.

                    Actually, when I wrote the post, I was thinking more of the dislosure issue in a social setting. My passion is tennis and cycling. With the approval of an HCM specialist, I have had to make some changes to how I approach both sports. People I used to take hard rides with or play intense tennis matches call expecting to pick up where we left off. Those situations have been troublesome. While some people are okay with my new style for both sports, others act like I have the plague. I suppose that is just a reflection of our societies' desire for perfection. We shun those who don't meet the standard.

                    Diagnosed with unobstructed HCM in 2004 after a bad experience playing tennis
                    Graduated to obstructed HCM by Dec, 2008.

                    Life outside of HCM: Law, Photography, Tennis, Music, raising kids and camping


                    • #11
                      Hi Boz,
                      It’s good to see you posting here, but I’m afraid I’m going to have to disagree with you on this one. There is good and bad on either side of this issue. I was quiet about my condition because I didn’t know about it at the time – but I am of the opinion that I would have been more fairly treated if we had all been aware of the actual situation.

                      On the other hand, I have seen people unfairly treated who did make the facts of their condition known. I think it comes down – like many things – to knowing where you stand in regard to the ADA rulings and interpretations of the laws and getting a statement from your doctor identifying you as a legally handicapped person. When you then notify your employer you are in effect saying, “This is my condition and these are the laws under which I am protected.” In most (but by no means all) cases your employer will think twice before trying to run you out – and in lots of cases you will get treated better, with consideration for your problems.

                      Not to many people can look into the future of all the various situations and know which way is the best way to handle each situation, but HCM has a way of making itself known in most cases – and sooner or later – so my vote goes to notifying your employer in such a way that he/she not only knows about your condition, but knows you know the laws under which you are protected. In the long run I think that’s the best you can do to protect yourself – yet it is by no means foolproof. It is only putting yourself in the best possible position should push come to shove.

                      Take care, and I hope to ‘see’ you again real soon.


                      • #12
                        Actually, when I wrote the post, I was thinking more of the dislosure issue in a social setting. My passion is tennis and cycling. . .
                        Yes - My answer might fit that half of the question better than the employer issue.

                        Though I didn't include it in this post, I have mentioned it before, I am self-employed - my clients are my employers. There are no rules anywhere protecting me.

                        I am certain that I would loose work if I was thought of as someone not physically capeable for the assignment.
                        • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                        • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                        • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                        • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                        • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                        • 2011: Brigham & Women’s - Medtronic ICD implant


                        • #13
                          I agree Boz. It is not unusual today with the poor listening skills some have, to halfheartedly hear an explanation of a malady. They go away distorting the persons synopsis in relay to the next person and next thing you know someone is telling you that they heard that person had gone out of business because they were gravely ill. I can not tell you how many times I have seen business go elsewhere with this same sort of thing. There is a lot to consider and each situation is unique.

                          Dx @ 47 with HOCM & HF:11/00
                          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                          Lead failure,replaced 12/06.
                          SF lead recall:07,extracted leads and new device 2012
                          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                          Genetic mutation 4/09, mother(d), brother, son, gene+
                          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin