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Dealing with the loss of identity


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Laoshur Find out more about Laoshur
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  • Dealing with the loss of identity

    I would like to open a thread to discuss this very difficult issue of a loss of identity. All of us have mental pictures of ourselves, accurate or not, which it seems to me regularly get attacked by the reality of this disease. Sometimes that comes from how others treat us; other times they come from changes in our ability to do things. These attacks are sometimes gradual and sometimes dramatic, but the ones I am interested in are those that seem to steal our identity.

    I put this under the GodSquad section because I firmly believe that my identity must come from how God regards me. But I hope many people from many backgrounds will comment on this, as I suspect that it is a big issue for nearly all of us.

    I am sure some people deny this problem as long as possible (my personal, but not very useful, technique), others fall into despair, others...

    Let's talk about it.


  • #2
    I am in the unusual position of having been diagnosed at 13 and now, at 36, am trying to create an identity for myself that is NOT predicated on the disease.

    It took me years to train myself not to mention HCM in the first five minutes of meeting someone new. My whole existence and drama revolved around HCM and I've worked very hard to not let it limit me as much as possible.

    Obviously, it does and still does and still will limit me in a variety of ways, but I am learning to push myself more (not too much, just more), and to figure out how to follow my dreams, travel, and be a whole person and not a disease.

    I tend to decide something is impossible before I even attempt it. Weeding that belief out of my head is the most important thing I am doing for myself.

    I went to South Africa a few years ago and it was a turning point for me. I wanted to kiss the ground. It was somewhere I never, ever even imagined I could get to or be in, and even though I didn't do anything really strenous but one small hike, I was in AFRICA! So I keep reminding myself that I have options.


    • #3
      Rhoda I identify with you completly!

      As you know in the states most of many peoples' identity comes from what they do. Like when you introduce yourself what do you normally do? My name is Mary and I'm an EMT. Many times I still say that and then some ask where and it kills me because that answer now is: was an EMT and yet again I'm reminded what this f&*^ing disease stole from me. Now that I'm not working I feel even more at a loss for my identity. Somehow it makes me feel less of a person.

      Slowly but surely I am trying to find out who the real me is and trying to not let my career dictate that. Another thing I hate about this disease is when I'm trying to figure out what my next career step is I have to ask my doctor's permission. I think that is worse than a kid having to ask their parent's permission to do something.

      Somehow though I will get through it and I hope that because of this condition it will make me a better person and I can let it just be a part of me and not dominate me.

      Mary S.


      • #4

        This is a great thread. I look forward to a good interchange about identity. Also I want to encourage you. This laatest news (another thread) must be devestating. I keep you in my prayers.


        God Squad co-moderator
        Nothing is as gentle as strength and nothing is as strong as gentleness


        • #5
          Hiya Rhoda... interesting topic!

          It's pretty tough when the image you have in your mind of who you are, no longer matches the image you see in the mirror. What makes it even tougher is coming to the realization that you've traveled beyond the point where you can ever hope to become that person again... the old you that you liked and respected so much, and could do all the things that you wanted. You ultimately realize that you've been way too sick for way too long to ever go back. That person doesn't exist anymore.

          A shrink would probably say that instead of trying to live up to the residual self-image you have in your mind, you should try instead to adjust the image to reflect who you are now... the 'real' you. Accept your new limitations and just be happy with the person you've become.

          Horse manure.

          You may not be able to go back, but I don't think that means you simply have to accept who you are now either. Look to the future instead. It's never too late to reinvent yourself. Decide who you want to be, invent a new identity for yourself, and then become it. I've done it twice now, and I get a little better at it each time.

          I went to college for business management and did that all through my twenties. Ick. Then I became an archaeologist of all things and ran with that for twelve years. Best years of my life so far. It hit me hard when I couldn't do that anymore, but now at the age of 42 I'm back in graduate school to become a cartographer and make maps. I'm loving it. It's a fresh start for me. Scary... but exciting at the same time. When I'm finished I want to head overseas for a while. New degree, new career, new friends, new location, new me.

          Bottom line, I think your identity is what you decide it to be, not what is decided for you.



          • #6
            Wow! Great responses!

            This is exactly what I was hoping for! I hope we can continue to talk about this and more will join us.

            I thought of this thread as I lay on a very narrow guerney twice a day getting my butt shot up while students that I knew very well stood there and assisted and talked Chinese with the nurses. I suddenly thought one day, "If I sat around for a hundred years thinking what would be unthinkable, it would surely be that I would willing pull my pants down in front of a student and let her push on my bottom for 10 minutes twice a day." At times I felt like a piece of meat that had to be worked on rather than a person, especially when the nurses decided I needed to be yelled at twice daily because I must be too stupid to get good medical help, since I was not getting well.

            I thought about it even more when faced with possibly being on oxygen 24/7 for the rest of my life. My first thought was to buy an RV and camp my life out. But, as much as I love camping, I love people better, so if it comes to this, I must find a way to be with people even if I do look a bit strange lugging my tank.

            In each of these ways and many more beside, I have felt that I have lost something of myself, or at least my mental image of myself.

            So if someone is wondering what I meant, maybe this will help.



            • #7
              Hello Rhonda,

              I look at HCM and the theft that has occurred of my previous identity, life, career, and world full of opportunity. When my son, Anthony, died from this condition over five years ago, my world, my person, my whole life changed. Even though I do not have HCM, I too am sensitive to those that do. I pride myself in the new knowledge that I share with parents, community, medical and athletic communities alike. There are hundreds of thousands that continue to walk around without proper diagnosis or care. With hindsight, I know my new identity will play a significant role in helping some of these people, including many of the members of this message board.

              My new identity is still shaping. My new strengths and power are still being uncovered. I don't know how my new identity will look in this time next year or the year after that, or five years or fifteen years from now. What I do know is that I turn my life, my faith, my hopes over to God to fulfill my divine purpose. With this new purpose I ask in prayer that God will grant me all that is necessary to be successful in this new life.

              Now I continue to practice these efforts, build these relationships and continue to turn inward for guidance, strength and purpose as I face my new life without my son in physical form but here beside me in spirit and memory, cheering me on!

              Blessings to each and everyone that continues to be guided and helped through this message board, the website, and the HCMA. We have been brought together for big things...I feel it in my bones!



              • #8
                Who am I? Who have I been? Who will I be? And what part of ME is HCM?
                Great post Rhoda and what a really important topic to discuss.

                Let me chime in. Like Sarah I was diagnosed young - I was 12. I did not however focus a great deal on it - in fact I did not discuss it all if possible and if it came up I simply said I have a heart murmur - heck I could hardly pronounce hypertrophic subaortic stenosis - the name I was given at that time.

                I, as you may have well figured out, am a a workaholic. I have found that being productive in what ever venue is simply how I am happiest. For 17 years I defined myself by my career in human resource management - people actually thought my name was Lisa Packard - as I was employed at Packard Industries for 17 years and many people thought I "was" the business. Imagine the shock when I told them all I was leaving to spend all my time with you guys! This past year when I made a break from the comfort of my identity at Packard did I really see who I had become - I was not happy with all of it - so CHANGE had to come!

                What did I not like - I did not like my disease altering the focus of my life and making me make choices I did not want to make. I took charge to alter my life so that what I loved and wanted to do came first and what I had to deal with -this big broken ticker- was able to get what it needed. RULE ONE - WHAT I WANT COMES FIRST - if I can at all help it - as we all know we must allow room for the rude behavior of this busted tickers.

                So the question is what do I want for my life - I want to build up the HCMA so we can help more people and find the answers to the questions WE need answered AND I want to spend as much time with my daughter and family as possible. What I must do - allow time for my ticker to rest so it helps me do what I want and love to do.

                Does my heart define me? Yes - I guess it does - but tell me who can say what is in their heart does not define them? In our case our hearts do not always define us the way we want -however within that thick walled heart - there lives love, hopes, dreams, Faith and home. I have gotten to know many of you very well - and you know what - I think you are all pretty amazing people with wonderful hearts!!!

                Who am I?
                I am Becca's mom, Adam's wife, my parents child, "Aunt Lisa" to many, the bratty little sister, the Jersey girl, the President, the community activist, oh yeh and I have a bum heart and a bunch of medical problems but who cares!

                Best wishes,
                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)


                • #9
                  Dear Rhoda,
                  Thank you for starting such a wonderful thread. As I wait for my myectomy on 12/12, I have been wondering how my life will change. Several weeks before my Mom died this year I was walking with her around her house. She was a very frail and feeble 87 years old . On the second lap around her house, I suddenly developed severe SOB and my energy level dropped to zero. I absolutely couldn’t keep up with her and in spite of my feeling that I was somehow abandoning her I just had to release her hand and let her continue on whatever journey her mind and body was taking her on. At that moment when I had to release her hand and stop, I felt the sudden realization that I was not the person I had been envisioning myself to be. I was stunned almost to the core of my being! My frail Mom had energy and breath to spare and I had no reserves whatsoever. I was so shocked that my face felt very hot and flushed. It was like a slap in the face and reality came flooding in and there was no more denying just how bad my condition had become.

                  I have had to change jobs several times because of my limitations associated with HOCM and am currently not working. As I sit here writing this, all I am sure about regarding my identity is that I am at the essence of my identity a spiritual being. All other visions I have had of myself have in time proven to be of a transitory nature. I am waiting with a joyful heart and excitement to see what the post myectomy transition brings into my life.

                  Peace and Joy,
                  \"We are not human beings having a spiritual experience. We are spiritual beings having a human experience.\"
                  Pierre Teilhard de Chardin


                  • #10
                    Great post. It has made me look at my identity. I was in the medical field for years, so I always said "I'm Midge I am an x-ray tech and now an office manager." I really never mentioned HCM, except for my annual check ups and I would have to be gone from work. Then those check ups became bi annual and of course even that increased. Now, I am Midge employed part time doing insurance and I am a heart transplant recipient. Sometimes, I think I identify too much with that transplant ID. It is a part of me but it is not me. I am who I want to be and I want to be ME! Midge, who laughs a lot, enjoys her family, sews, quilts, yet I do want people to be amazed that I can do all of this and I had a heart transplant. So, I think our outlook on HCM, transplant or whatever our burden is of utmost importance. Yes, we have our bad days when we really identify more with HCM than our true being. We must remember that everyone has bad days whether they have HCM or not. We need to try and be our own person. I always think of what I want said at my memorial service. It is not poor girl she had health issues. I want them to say no one would ever know she was sick most of her life. What a great topic.

                    Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                    ICD&Pacemaker 1996
                    Heart transplant March 19, 2004 @ Mayo Rochester
                    Mom of Kaye.


                    • #11
                      Wow, I read this thread, and want to respond, and then I realize how long it's been since I read them all. It's not a recent thread but came up as new on my screen.

                      Anyway, I do notice how HCM has changed my identity. I was always active, not in sports, but in everyday terms. I was the one who joined in, riding bikes, hiking, yard work, etc. And now...not so much. I know that many things will be too much for me.

                      My husband drops me off at the door when we go somewhere, so I don't have to walk too far. Taking the stairs when you have to is a nightmare coming to life. Have you noticed how many store parking lots slope down to the store, but then you have to push your cart uphill when you're done?

                      People you interact with in daily life overestimate your abilities, physically, and then you have to explain yourself...ie., walking into someplace with someone. You have to slow down because of a dizzy spell, or that it's too fast. Or you have to bend over and pick something up, get a head rush, and then have to rest. Etc. etc. etc.

                      Anyway, yes, HCM has changed my identity, both in myself, and how I interact with others.

                      Sometimes I really grieve the person who is gone.



                      • #12
                        I too read this post and at the time I read it was hesitant to respond. I think it triggered me to think about so much that I was not prepared to reflect on.
                        I think it is a great post and causes reflection to occur , reflection that has many sides and variations as we are all effected by HCM differently and uniquely.

                        For me , the diagnosis was in 2000 at a time when I was feeling that my life was surely to end soon. I looked and felt so different , my life was changed, I felt doomed. Most of the emotions I went through I went through alone and silently as my doctor had been dismissing my complaints and was adamant that nothing was wrong with my heart. Although my private research led me time and time again to lots of information about HCM, to Lisa's HCM site, and actually to the Canadian site, I was afraid to discuss my findings with too many people for fear that they would think I was nuts.

                        At that time, I was already very far away from the person I had once been. All my vibrancy and zest for life was gone . I had ballooned up 130 pounds, was awake most nights having chest pain and shortness of breath, dizziness with each step let alone each activity attempt. My heart pounded so loud in my head that even when I thought I might sleep I could not . Feed me lunch and I would have difficulty functioning the rest of the day. The days were so hard to get through , I started thinking I can not go on 18 more years til retirement, I won't make it, something is very, very, wrong with me . I found myself thinking, death would not be too hard to face if it comes now. I found my self throwing things away trying to clear my desk and my home so it would not be too messy when someone else eventually had to do it. It was overwhelming and physically I was not able to accomplish the task. Friends and family noted the changes and losses I was experiencing, how it reflected in the person I was now becoming the one they saw everyday trying , struggling to get through the days.

                        Thankfully one brave, person stepped forward and said, " Listen, maybe you need to go to Boston and find out if what you think is, is or is not true. Although I was scared and overwhelmed and even fearfull that Boston would find "nothing wrong with your heart" label me a pschosomatic or something, I picked up the phone and made the call. More change and despair came with the evaluation, realialization , and eventual affirmation that "you have HCM and are at high risk of sudden death" diagnosis. On November 6th 2000., I found out that I had been right about everything. Me the patient! I felt that I was now defined by a disease that would kill me and it had already robbed me of so much that when the dust settled I was ready to go down.

                        Things did not get better for awhile.. a loooong while, when I was feeling so poorlly and unregognizable to most who knew me well.

                        My first call to Lisa, I barely remember, but I think I was still so raw inside and out I barely heard any of her words of wisdom and support that I am sure she gave to me. I think maybe too, I was so far , far away from who I once was that I could not possibly hope that I would ever recapture a reflection of who I once was let alone see hope again. I know the first call and a very distraught son at least led me to make the second call to Lisa and it resulted in the biggest light that could have ever reflected my way... and I saw it. I saw the hope and the possibility that I had lost .

                        Her call led me to another Boston Hospital . Lisa paved the way and opened the doors to NEMC for me, I did not feel alone anymore and I was not alone and I knew it. I felt I could trust in the possibility of hope again and maybe it would result in my recapturing a part of my now distant life .

                        What I have learned most is to never give up on hope and help again. When I feel a tendency to give up and pull back into myself,and when I trust in someone who may possibly not have the right answers , I keep myself present and I look for someone else who knows more then the person who dismisses me . I don't do the ," I am so unique I can't be helped thing anymore." and "No one really cares." Yes we are all unique and we are effected by HCM differently and our lives do change, we change, we are not ever the same.... our lives ARE effected by HCM but, there is a new life and a new way for us all. This new way is different from non HCMer's but it is a life worthy of living to it's fullest , I can attest to that.

                        Two years and 3 months after myectomy I still am not the same I once was I am different. However, I am still Pam Alexson . I am a new someone and am learning to live the life of that new someone. I am trying to not always remember what HCM has taken from me but. instead I am trying to think of what it has given me.. Just being a part of this wonderfull web site filled with wonderfull people, all of you has changed my life added zest to my identity and it has given voice to HCM, the disease.

                        I want to encourage all to reflect here and to share the changes that HCM has made in each of your lives, the changes in your identity and such. I think in doing so you may find that you not only process the loss and yes the saddness but you also find the positive changes that have come about. I know that as I read each of your individual posts I celebrate each of your lives, your evolution and your uniqueness .

                        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
                        Myect.@ Tufts, Boston:10/5/03; age 50. ( gradient@ 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


                        • #13
                          I've been thinking about this thread a lot since Rhoda first posted & I think most of the time I have this in perspective.
                          In the past 3 years I've had a Myectomy, Double ByPass, 2 Stents, 9 Caths & am now waiting for a date with Dr. Lytle @ CCF for a new Mitral Valve. Not to mention numerous CHF events.
                          Yet I fell so LUCKY, I'm a very upbeat Happy Lady! During this time I've gone on 2 cruises, 2 trips to vegas & a trip to Europe, last summer.
                          I used to Run, I used to ride my Horse, I was the first one to suggest an adventure to my Friends, I was the First person on the Dance Floor.
                          I have a new list now: I laugh a lot, read & knit more, see my Family & friends (always with the knowledge that I may have to cancel, if I fell crummy).
                          My Husband is WONDERFUL & very supportive. I'm so Blessed & I remember that many times a day! I have a strong belief in G-d (which goes a long way).
                          My cardio says I have a huge pain tolerence (he encourages me to complain to him more)-which helps a lot!
                          I've been invited to speak at the support group, at my local Hospital, for Cardiac Patients. I plan to do this after my Valve is fixed.
                          Sure there are some bad days (some are HORRIBLE), but it beats the alternative!
                          So get out there & do whatever you are capab;le of doing that day, keep busy & schedule naps. It could be so much worse-you are still you, just a different version!
                          Regarding informing people of my HCM, I don't. Only my friends & Family, unless someone notices the scars, then I keep it brief.
                          So get out there & LIVE, LIVE, LIVE!
                          P>S> I'm only 58 years old, so I still have lots to do!


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