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People in my life understand HCM

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Lisa Salberg Find out more about Lisa Salberg
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  • People in my life understand HCM

    Do you feel that people in your life; friends, families, co-workers, employers, school officials or health care provides understand HCM well enough to make you comfortable?
    119
    Yes
    6.72%
    8
    No
    68.07%
    81
    Sometimes
    26.05%
    31
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Since my husband is the only person that any of our friends or family knows with HCM, they only know what I tell them. He acts like there is nothing wrong with him, so others get the idea that it isn't a serious disease. Even family members don't get the big picture. Many of them wonder why I research and read so much about HCM. They don't even understand something as simple as my wanting to attend the HCMA annual meeting in June. I'm still not sure that I'll make it to NJ in June, but I would think that I should get a little support for trying to learn and for wanting to make a difference. Oh well, enough venting. Everyone have a good day!

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      I'm with you, Reenie. People simply don't understand although a few will ask me to explain. Most just look at me and say, "You look fine!!!" I get so tired of that comment even though--from my professional background in nursing and human services--I do know it is a comment heard and resented by most people with so-called "hidden" disabilities (disabilities which don't cause a visible change in the person's appearance).

      I think it complicates others' understanding in that my ability to do things can change substantially from one day to another. Face it, even I have trouble understanding that aspect of HCM!! Why, I wail, can't I do that? I did it yesterday!!!

      Pat

      Comment


      • #4
        Ummmm No - That's why I am glad that I found this organization and website. My family tries to be supportive but they forget and just really don't understand. Even my mom, who also has HCM, isn't really interested in talking about it. She feels guilty since it looks like it's hereditary and she is doing much better than I, so she doesn't quite understand either.

        Most of the medical profession that I have dealt with have tried to be helpful but sometimes I get the feeling that they think I should be glad to be alive and just quit complaining.

        Oh well, it has given me more empathy for others that suffer from hidden or obvious disabilities. There is nothing like walking a mile in someone elses shoes to understand another's problems.

        Dolly Y

        Comment


        • #5
          Invisible Disabilities

          Because I've been dealing with Hepatitis C Virus (abbreviated HCV)and to most everyone I look fine, I've had to deal with all the looks, the comments etc. So now dealing with HOCM they all just think I'm a hypochondriac (sp)

          Luckily though my husband and a few of my siblings do get it that I am very sick at times and they respect that. That said, to all of you who are struggling with your invisible illness, here is a web-site that can help you help your loved ones. This site is probably been shared by Lisa and many of the long timers (note, I didn't say old timers) it's worth sharing it again.

          Here it is: www.invisibledisabilities.com/index.html

          May this website be as helpful to all of you as it has to me.

          Comment


          • #6
            I like that UMMMM NO...responce.. I know it seems like a silly question but it is one that actually makes some of us take a step back and think...
            WE live HCM...we have no choice but to deal with it everyday and therefore we may sometimes forget that others can not see..or choose not to see that we are living with a disability.
            A man I do not think I have ever mentioned here is one of my employers in my "other life" - His name is Dan, he had Polio as a child and is now over 60 yrs old and has not been able to walk on his own his entire life. Dan is really an amazing person... he is the most "able" person I know...yet he has a very obvoius disability. He is truely one of the most intelligent people I have ever met (including all of my doctor friends..sorry guys!) My point is Dan may not be able to walk on his own but in the 15 years I have known him I have not heard him complain ONCE about it. Even when I have seen him fall...my first reaction is to help him... Dan is not looking for anyone to help him...he gets up on his own and gets on with his day. I have learned a great deal from Dan...Some people think I am a bit nuts for how I deal with my symptoms because I use the same attitude as Dan...I get myself back up and get on with my day..however I can (OK somedays it may be straight to the sofa...other days off to a meeting!)
            What the heck is my point you may be wondering... well it is rather simple...you always want what you do not have... with HCM we would like an outward sign that we are not well that we have a disability...and those with outward disabilities wish they had one that could not be seen.

            Last November my neighbor had a bad fall... she broke 5 ribs, damaged her lungs, liver and kidney. She is just getting back on her feet and said to me on Sunday... I never understood these people with chronic illness who look just fine but say things like "I do not feel well enough today to do that"... She smiled and said "now I understand!" I smiled back and said.."welcome to my world"!

            Have a great day everyone!

            Lisa
            Knowledge is power ... Stay informed!
            YOU can make a difference - all you have to do is try!

            Dx age 12 current age 46 and counting!
            lost: 5 family members to HCM (SCD, Stroke, CHF)
            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
            Therapy - ICD (implanted 97, 01, 04 and 11, medication
            Currently not obstructed
            Complications - unnecessary pacemaker and stroke (unrelated to each other)

            Comment


            • #7
              Lisa,

              Thank you so much for your inspiring words today (and always), your message was just what I needed this morning!

              Lynn
              Lynn Stewart
              HOCM 4/2002
              Cleveland Myectomy Crew 8/2002

              Comment


              • #8
                I agree fully. People will ask me about my time off from work or the fact that I had open heart surgery, what the cause was etc, but the fact that I now appear healthy and vigourus leaves them with the idea that I was cured by my surgery.

                That's what makes this board and the people on this board so great.

                Bob
                Cleveland Myectomy Crew
                Member since November 2002

                \"Chance favors the prepared mind!\"

                Comment


                • #9
                  Glad i found this post...

                  Does anyone else out there get kinda tired sometimes of being made to feel like having HCM is the result of a poor lifestyle?

                  'Oh Jim... You have heart disease and you're so young... What did you do?... Boy, you must have really not taken care of yourself to get heart disease at such a young age... Are you still using salt?... How about eating fatty foods?... Watch that cholesterol now... You need to take better care of yourself, bud... It was the smoking and drinking that did it wasn't it?... Why are you so tired all the time?... Get out there and start lifting weights again... You're just being lazy, Jim.'

                  Arrrrrrrrgh!

                  It's gotten to the point where now i just tell people i was born with a birth-defect, which isn't all that far from the truth anyway. I'm afraid the term 'heart disease' just has way too many negative implications.

                  My turn to vent. LOL. Thanks!

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

                  Comment


                  • #10
                    Oh Jim,

                    I know exactly what you mean. I guess it's natural to assume all heart disease is the same as coronary artery disease which does owe a lot to lifestyle issues. I was thrilled when I had a catherization done and no sign of any problem with my arteries was found. So now, I can tell people that if the subject comes up.

                    I do something similar to you and just say it's a genetic problem and then try to explain if they want more info.

                    Dolly Y

                    Comment


                    • #11
                      Bob & Jim you really nailed it on the head. My own brother thinks and says work out more, lose more weight, which I do need to do and am working on that. He and the rest of family and friends were stunned to know that my heart cath. showed no blockages what's so ever.

                      Unfortunately when they see my good times, when I look like the average hard working woman, running after children (day care), planning and putting the family functions together, handling our home business, supervising care and giving care to dying family members, on and on and on, I can see were they have a hard time with the days I say no. Or the days when I'm rushed to ER or the days I wind up in the hospital. I don't talk about my illness to my friends and families a lot but the brochure I talked about earlier I think helps them to understand.

                      But boy there are days when I just want to yell at them for asking me about what I'm eating or how come I didn't get to the gym or walk for three days, or why I can't handle this or that for them, but I just leave it a lone and know that I'm choosing not to yell at them because time is so precious and I don't want to spend it being angry.

                      And I also remember that they love me very much and worry about me too. Little by little I'm choosing to say no and being ok with that. But it's been six going on seven long yrs getting to that point. Hang in there for all of you who are new to not being able to do what you could do yesturday.

                      Diana

                      P.S. I have to admit that I love the commercial that shows the really tan 50 something looking gentlemen on the diving board and the catch is that all though he looks good he's a walking time bomb because of his collesterol. Mine's perfect with no clog arteries.

                      Comment


                      • #12
                        Diana,
                        I can relate...

                        Jim,
                        Birth Defect... I never used that term although I have said that "I was born with a bad heart". While Birth Defect as a term is not that bad..I am a detail freak and MOST cases of HCM do not appear till long after birth...although the cell structure is there...hhmmm ya gave me something to think about...

                        Good day all!
                        Lisa
                        Knowledge is power ... Stay informed!
                        YOU can make a difference - all you have to do is try!

                        Dx age 12 current age 46 and counting!
                        lost: 5 family members to HCM (SCD, Stroke, CHF)
                        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                        Therapy - ICD (implanted 97, 01, 04 and 11, medication
                        Currently not obstructed
                        Complications - unnecessary pacemaker and stroke (unrelated to each other)

                        Comment


                        • #13
                          I agree and completely comiserate with so many of the notes that I read here. I too have perfect arteries, and one time before my diagnosis was told my good cholesterol was so exceptional I would "NEVER" die of a heart attack. He is no longer my primary care doc by the way. Anyway, some days I wish people could see just how exhausted I am after getting up, shaving and showering then getting dressed and having to rest on the bed because I am completely spent...all before my work day has even begun.

                          Anyway, this is a great place to check in each morning so I know I am not alone, even though I am the only person I know personally with this disease.

                          Doug
                          NEMC's (Boston) First Myectomy 7-22-2003

                          Comment


                          • #14
                            Here is a quick funny one...
                            Last year at the American Heart Association sessions I stopped by a lab company that was "assessing your risk of heart disease" It was a blood test and a B/P ..and they measured your waist too ..not sure what that was about... anyway I returned for my results and was told I had NO risk factors for heart disease... and I was congratulated and told to have a nice day..
                            I walked away laughing... just because I did not have "bad" numbers I was not at risk for HEART DISEASE... I returned later and spoke with the Highest ranking person in the booth and explained how misleading the information was and told him about myself... his jaw hit the round...then he recovered and said... Well thats (HCM) is not heart disease it is a genetic disease... I shook my head and left...knowing I had a great deal of work ahead of me!
                            Lisa
                            Knowledge is power ... Stay informed!
                            YOU can make a difference - all you have to do is try!

                            Dx age 12 current age 46 and counting!
                            lost: 5 family members to HCM (SCD, Stroke, CHF)
                            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                            Therapy - ICD (implanted 97, 01, 04 and 11, medication
                            Currently not obstructed
                            Complications - unnecessary pacemaker and stroke (unrelated to each other)

                            Comment


                            • #15
                              Jim, you say birth defect, I tell them a heart condition I was born with. I don't like using the term heart disease, although it is correct, most people think disease implies constant detoriation and I don't feel I am detoriating.
                              Most of my friends did not know about my condition until recently, to them I was quite normal, until it came up as part of another conversation. They wanted to know more about it because naturally none of them had ever heard of it.
                              Well stupid me, why didn't I think of this before, now these guys rarely let me do any work, lifting, digging, etc, when they are around.
                              As they are sweating and tolling I think to myself, HCM can be a good thing.
                              Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                              So if you are capable of thought then you are capable of great things
                              Good luck and stay well.
                              Glen

                              Comment

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