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Life with HCM - How we lie to hide our pain

When you realize that your version of reality is wrong, it’s sobering and its time to be honest with myself. I am a liar, what I lied about and whom I lied to changed throughout my life, but fact remains I am a liar.  Today, I have vowed to never lie about this again – and I vow to not whine or complain.   I will tell the truth even if that truth makes others uncomfortable, worry, or treat me differently.  Let me explain.

To understand the lie, you need to understand the basis.

I am a 46-year-old woman living in northern New Jersey and I was diagnosed with a genetic heart condition at 12 years old.  Hypertrophic Cardiomyopathy (HCM) is what it is called today; in 1979, they called it idiopathic hypertrophic subaortic stenosis (IHSS).    When Dr. Paul Goldfinger, a cardiologist in Dover NJ (at the time) diagnosed me I recall saying to him “yes I know it runs in my family”.   My grandfather died suddenly at 43, my great aunt died in her early 50’s and my uncle and sister were diagnosed at this point.

The lies and the reasons

I was a 12-year-old girl who was just told, “You have a condition that could cause sudden death and there is nothing we can do about it”. Imagine this for a moment, you are in a doctor’s office and this man tells you in a rather factual tone “you could die and I can’t stop it”.  My first question and I believe my only was “do I have to keep doing my homework?”   A part of me thought this man is clueless – look at me I am FINE.  Yes, he asked me if I had any “symptoms” and I just said “No”.  Let us be realistic for a moment, how would I know if I did? I was 12, I had nothing to compare how I felt to, and I was just “me”.

So there is my mother sitting beside me hearing the same thing.  We did not say anything to each other about those words “you could die”.   We just got up and left.  I remember she called my father from a pay phone and shared the news.  Thinking back I cannot imagine being in her shoes at that moment.  I was the second child to carry this diagnosis and risk.  Therefore, the lies began that day and they have not ended.   I tried to put a smile and my face and just put this behind me. When I first wrote this article, my mother was alive and I admit I was still protecting her in a sense, she passed away in December 2014, its time to be a bit more honest in hopes it may help someone else.   You see, my mother never took me back to the cardiologist after that first appointment as denial was her way of dealing with my diagnosis.  I am not angry with her for this, she did the best she could and it was her way of coping, it could however had had deadly consequences. I am, however to some extent,  my mother’s daughter and my mother taught me to deny and ignore, so I did. I covered up my symptoms because it was clear to me that the topic was painful to her and I could not hurt my mother this way.

Looking at my father, there was simply no way I wanted him to worry about me.  I knew he lost his father when he was only 17 years old. He had symptoms of his own, his brother was diagnosed and now his second child was diagnosed, no dad should not worry about me.  The loss of his father had ripple effects in my family that honestly can be seen today; even many years after dad passed away himself.

What is Normal?

So the first lie, was not really a lie it was lack of understanding. Didn’t everyone feel there heart beat as I did? POUND POUND POUND…. Why else would people use expressions like “I was so excited my heart was pounding” or “that makes my heart race” isn’t it normal?  The reality is, no it is not normal.   That pain in my chest and back that would come every occasionally, didn’t everyone feel that?  If not why use expressions like “it was heart crushing” or “it hurt my heart to hear that news”… didn’t everyone have pain in their heart?  More reality, no they do not.    Then there were the symptoms of shortness of breath – well I thought other kids were simply in better shape than I was – I was right to a degree – they had normal hearts and I did not.   I 5’3” and weighted about 105 pounds wearing a size 0 to 3 and looked fit, looking back maybe I looked too thin (but of course as a girl I thought I was too big).

The first lies were to my parents and family – No, I didn’t feel badly, No I didn’t have symptoms, and Yes, I am fine.   Nevertheless, as time progressed the reality of my “symptoms” began to come into focus.  No, I could not “keep up” with my peers.  Roller-skating was the social event of the week through 7th and 8th grades and it was a challenge some days to keep skating, but I would not let on that it was a struggle.   rollerskatingMy friends wanted to skate, not sit on the side with me so I would either hide in the “penalty box” with my legs up on the wall waiting for the chest pain to go away or make one of 10 bathroom stops in 2 hours to catch my breath.  It just became my normal way of acting while skating and nobody noticed.  I recall once saying I had chest pain and I was mocked and teased that I was an old lady or that I was “out of shape”.  I tried to never bring it up again.

Out of fear of being excluded from social events, I didn’t want to bring up my “symptoms” and I did not want to be “different”.  I recall one day I was walking around the “block” (living in suburbia this wasn’t a city block, but it was ours and it was hilly). My head began to spin and I was filled with fear, I thought this is it, this is when I die, I was 13 and with my friend Julie.   The look on her face was so serious and she was afraid for me.  I sat down and started the line of excuses and denial.  I am fine, I just need something to drink – “I was dieting and now I need to eat something”.  Looking back now, I had an episode of tachycardia (rapid heart rate) that could well have killed me that day, thankfully it didn’t.

Seeing your friend with that type of fear across their face was something I never wanted to see again.   Let the lies continue.

One day, I could not lie and what happened confirmed my prior belief it was better for others not to know (well at least in the mind of a 14 yr. old).  I was a freshman in gym class at Morris Knolls High School. During the “warm ups” we were told to do push-ups.   I attempted to and was hit with a nasty bout of chest pain – so I was laying on the floor and hoping that nobody would notice I was not doing push-ups.   MK 80'sThe teacher Coach Regan, who was the football coach and had/has a clear reputation of not being very fond of non-athletic girls, was standing beside me.  He said, “Do them right” to which I replied “I can’t I have chest pain” – it should be noted that I had a doctors not stating I should “self-limit”. He then took his foot under my chest along my right side and attempted to “lift” me with his foot – so… he kicked me… he actually left a bruise.   I was now in pain from my heart and from being kicked in the chest by my teacher.  The tears welled up in my eyes and I thought ‘see this is what happens when you show your symptoms’.   He saw I was upset and yelled at me telling me to “sit out for the day and take a 0”.  On my way to the bench, several of the girls in my class formed a “protest” and sat out with me. This protest infuriated the teacher and I asked if I could please go to the guidance office, I wanted to call my mother.   The next day the teacher and my father met with the principal a day later and I was so disappointed in the school and teacher for not considering my health and making it sound like I was a “causing trouble”.    They are lucky my parents did not sue them; instead, we agreed that this teacher was to have no contact with me for the rest of my time in the school.   My worries about discussing my symptoms were validated and in my mind and it was safer for me NOT to discuss them.

High school was filled with cardiac symptoms, but nobody knew it.  Not even my boyfriend, who later became my husband.   We went on dates and I smiled through the pain.  We walked down the hall hand in hand and I smiled when I could barely breathe.  While there were the rare occasions that I could not hide it and told him, I hated seeing the pain on his face knowing I was hurting.  This was not how I wanted him to see me so I would make a joke or minimize my symptoms and “soldier on” all the while honing my skills of stealth disguise of the reality of my life – I lived in pain or battling shortness of breath.

I was finally put on medicine for my heart almost by accident when I was 19.  I had terrible migraine headaches and saw a neurologist who recommended a betablocker.  He said it could treat both my heart and my head so at 19 I started taking medication.   A few years later, I had what I thought was the worst headache of my life, I called Dr. Grossman, my neurologist on Father’s Day 1990 and he met me in the Emergency Room.   This was a rare event where I did complain.  This may have saved my life.  I was not having a headache I had a stroke, 3 weeks after I was married.  Now here I am in my early 20’s with a great job and I just had a stroke due to complications from an infection (endocarditis) in my heart I developed after a dental procedure done 2 days before my wedding.

Me and Dad001I was in the hospital for 10 days and home recovering for several weeks.  My job was sustaining me and the source of my health insurance.  I could not let them see how sick I was or how fragile my health really was – what if they didn’t think I was healthy enough for the job?    I refused therapy, I didn’t have the time and I knew how to push through symptoms.   I went back to work as soon as I could.  Ignoring the increased shortness of breath and fatigue.   I can say that my chest pain lessoned after the stroke, oddly the scar left on my mitral valve reduced part of the obstruction in my heart, which may have been the cause of my chest pain in the past.  However, I kept up the lie… and denied most if not all of my symptoms and limitations.    I had managed my “reality” on my own and few people knew that HCM really impacted my daily life.  Most doctors referred to me as “asymptomatic” not knowing the real meaning of the word I just smiled and accepted it.   However, reality started to change a bit in 1990, shortly after my stroke news came from Montana – my uncle had collapsed in a parking lot and was found dead at 48.  I remember thinking that day well he is so much older than I am, he is not me, keep denying it affects you and you will be fine.   I grieved his death in ways many could never understand.   My father, who by this time was also diagnosed with HCM, had to bury his little brother.   I thought “wow how terrible to bury your sibling”.

5 years later, on the anniversary of my stroke, my sister died of HCM and I stood next to my father as we buried my sister.  I took her ring off before she passed away, swearing I would wear it until she woke up, 19 years later it is still on my hand.  There was no way I could EVER cause my father – a man who lost his father, brother and daughter to the same disease we both carry– more pain by showing my symptoms.  KEEP the lie going.

Now my sister children, one already diagnosed with HCM, the other would be years later are in the care of me and my family.  They had endured a loss so profound I would never do anything to bring them more pain or worry – keep the lie going.

A month after my sister died, my daughter was born.  I knew she carried the gene when she was 7.   How could I let my little girl see how hard this was to live with, it was not an option… don’t let her see.   I even developed hand signals with my husband if I needed a moment to deal with bad symptoms.  Even with 4 ICD’s implanted to protect me from sudden death – take it all in stride… never miss a beat and keep smiling. Keep the lie going.

My sisters death lead me to change my life and my work.   I started a non-profit organization to help other patients with HCM.  In 19 years I have spoken to over 5000 families like mine offering education, support and advocacy.  Yes I would on occasion share some of my symptoms with some of the clients I work with, I rarely tell the whole story, it’s my burden not theirs.

However, my battle is changing, as is my heart. I am hopeful that honesty and relieving myself of the stress of denial and the burden of the lies will lighten my load.

Here is my truth.   Waking up in the morning and getting out of bed is a huge challenge, not because I am depressed but my heart is not happy in the morning, I have palpitations and breathing is difficult early in the day.  I take my time getting ready because if I rush I get dizzy and breakout in a sweat.   I pace myself because if I do not my chest tightens and I cannot breathe.   I need a great deal of sleep 8-9 hours at minimum, without it I do not function very well.   My hands tingle from time to time as do my feet and a few deep breathes helps it go away.   Getting off an airplane is always hard, as I cannot breathe very well.  My heart has on average 3000-5000 PVC’s (non-life threating abnormal beats) every day… I feel most of them and they distract me.  I think about my heart many times during the day.  I monitor everything I eat and drink because the wrong foods send me into fluid overload (heart failure). In short I spend my life living on a balance beam all the while doing my best not to fall to into despair and depression on one side and becoming a cardiac cripple on the on the other.   That “safe” place on top of the balance beam is where I want to live but it is a tricky place – it’s a place where reality and limits meet.

I know I am not alone; I have talked to thousands who are just like me.  They balance, they fall, they are depressed, anxious and sad, and they are happy, functioning and amazing.   We are all joined in heart and understand “our lie” – the ones we tell others and the ones we tell ourselves.

I do not know where my journey will take me next – life on the balance beam is unpredictable.  I may well land on a heart transplant list at some point – or I may balance in the middle struggling silently day-by-day – only time will tell.

Nevertheless, every day… I look down at my right hand; I see a ring, my sisters’ ring.   I have been wearing it since she died in 1995, I am still here – she is gone – I am the lucky one, I will not complain.

“DoKeys Pix butterfly(2)n’t regret growing older – it is a privilege denied to many”

While I will not “complain”, I also will not lie.

Sincerely,

Lisa – your bighearted blogger