An Open Letter to the Doctor Who Changed My Life Forever

Less than fifteen minutes.  That is how long it took for you to steal my childhood and become the cataclysmic force that set everything in motion.  Years ago, I tucked your memory away in the far corners of my mind, and I chose, albeit unintentional, not to think of you.  But, life has a funny way of catching up with us, and you, a pediatrician nonetheless, have haunted my dreams for years.

You see, although it was not your intention, you became the monster of my dreams, one which manifested itself in indecision, trust issues, anxiety, and Post-Traumatic Stress.  It has taken time, and much soul-searching, but I have finally had enough and this is for you.  

In the last year, I have come to terms with my Lymphedema diagnosis itself: the pain, the disfigurement, the swelling, the life adjustments, and the complications.  However, I have learned there is a distinct difference between dealing with my Lymphedema diagnosis and dealing with the pain and trauma of years of misdiagnoses, and of course, the one that started it all.  The wrecking ball to a child’s innocence and the blown tire to a crash course of events.

You have become the nightmare that has plagued my dreams, but not just that, you have crept into every one of my waking moments.  I am ready to say good-bye to you once and for all.  But, you probably do not even remember me, correct?  Why would you?  It was less than fifteen minutes.

Let me remind you who I am.  My name is Christine Hilcken.  To family and friends- I go by Chrissy.  I am a 28 year-old woman who is happily married to my high school sweetheart.  We have a furry son named Benson and we own a home on Long Island.

When I was younger, my primary care physician was affiliated with Northwell.  You were a physician in the same practice.  When I was 14 years-old, I developed a contact dermatitis on both hands which escalated quickly into an infection.  My mom, who was a registered nurse, took me to my primary care physician’s office.  However, she happened to be out of town.  You were the covering physician.

Recently, I was asked to return to that day and to explain to someone what I remembered.  You see, I have not allowed myself to truly think about it because it was too painful.  Once I did, I realized how vividly I remembered that day.

Again, I was 14 years-old and had an appointment with you between late morning and early afternoon.  I remember I was wearing sweatpants because they were the easiest to take on and off without use of my hands.  Nor could I do my own hair, and thus, it was dirty and disheveled.  Mom and I sat in the waiting room for what seemed like an eternity to a 14 year-old who was in pain.  At that point, the pain was enough to produce tears, and my hands were red, slightly swollen, warm, and small blisters had formed.  My symptoms were escalating at an alarming rate.

The nurse called my name and I remember it hurt to move too quickly and I had to make sure not to use my hands.  We walked down the hallway and passed multiple examination rooms.  To be more specific, there were doctor’s offices to my left, and examination rooms along the back wall and to the right.  We walked straight ahead and slightly to the right and entered the examination room.

You came into the room approximately 15 to 20 minutes later.  I should have known from the moment we met that you would be my undoing, but I was 14 years-old and naïve.  To that end, I do not believe that you were unqualified or lacking intelligence, but you were arrogant, rude, and lacked any decent bed-side manners.

From the moment Mom and I started to speak you started to dismiss us.  We told you that I could not use my hands, and I could not bend my fingers.  We told you that my hands were itchy, and they were starting to burn.  We told you that the blisters, although small, were started to fill with fluid.  We told you that we were nervous because my symptoms had quickly worsened.

Deep down I understand that your actions were not intentional, but nonetheless, you dismissed us.  You invalidated our complaints, and told us that you did not believe it was that bad.  You told us to put some ointment on my hands and it would heal.  You were arrogant, rude, and dismissed every complaint made to you.  In fact, you acted like our mere presence was a bother to you, and you implied that I was crazy and my mother was an intention seeking drug addict.  Honestly, looking back, I am shocked you did not laugh in our face.  This all occurred in less than 15 minutes.

I vividly remember the moment you left the room.  I looked at my mother and I cried.  I cried for your inability to help me, for the pain, for the hopelessness I felt, for the loneliness, and most of all, for not being believed.  We returned home, but in the next few hours, my symptoms had escalated exponentially.

That night, my cousin was sleeping over.  We had been eating dinner downstairs at my Nana’s house.  But, by dinner, I could no longer feed myself, and I remember my tears falling into my plate.  My hands were incapable of holding a knife or fork.  Nor could I use them to open the door to go upstairs.  We tried to watch a movie that night to no avail.  In the middle of a sleepless night, I woke my mother in tears and asked her for help.

I was admitted to the Emergency Room with a severe cellulitis infection in both hands, but my right hand was worse.  The Emergency Room physician insinuated that my mother had waited too long to bring me to the hospital.  Can you believe that?  She brought me to you, a pediatrician, and she is the one who is treated as a neglectful mother.  In fact, she is the one who has had to carry around that guilt to this day.  Yet, you have no idea that your actions had consequences.  How is that fair?

By the time I was admitted, my hands felt like they were engulfed in flames, and the blisters were engorged with fluid.  My hands were red, hot to touch, and swollen.  It took two rounds of morphine before the pain even began to subside.  I remember the nurse smiling at me and saying, “Honey, you must have been in pain.”  With around the clock I.V. antibiotics, my hands started to return to normal a couple days later.  But, the damage was done.  You see, your failure to diagnose and treat, resulted in my compromised lymphatic system and future nerve damage.  After suffering from a compromised lymphatic system, subsequent swelling, and a shoulder surgery, I developed Lymphedema, an incurable and disfiguring disease.

For years, I thought should I have said more?  Did I not say enough?  Did I not cry enough?  Did you think I was crazy?  Why did you not help me?  Were you not a pediatrician?  Was your job not to take care of children and treat them?  What did I do wrong that day?  What did I do to deserve your cold treatment?

Today, I can finally admit that I did nothing wrong that day, nor did my parents.  You, my pediatrician, failed in every sense of the way.  Today, the 28 year-old adult, knows you made a mistake and that sometimes those in the medical field make mistakes.  The 28 year-old adult forgives you.  But, the 14 year-old, the girl you threw aside like rotting garbage, she has been broken and alone for a long time.  She has had a very difficult time forgiving you.  She is confused, rejected, and inconsolable.

That fourteen year old girl knows that you failed.  You failed the medical system, you failed future Lymphedema patients, you failed her parents, and you failed her that day.  You failed.

It appears I am not the only one who has felt this way.  I read your reviews.  A couple of them sound like something I would have written 14 years ago.  They characterize you as arrogant and rude.  Sound familiar?

What do I want to say to you now?  LISTEN.  Please, LISTEN.  You are a pediatrician and you are responsible for the children who come to you for help.  There are even some families that appear very fond of you.  You must have done something right for them.  I thank you for that.

But, if you listened to me that day, and heard what I was saying, you would have understood.  You would have understood that I was in pain and I was scared.  If you stopped for a minute, you would have possibly thought about the ramifications of your actions.  You would have considered the mere possibility that this would escalate far quicker than anyone thought.  Or maybe, you would have told me to return in a few hours if symptoms persisted.  Instead, you rejected me.

Did you know back then that cellulitis infections could pose a detrimental threat to the lymphatic system?  Did you know what Lymphedema was?  Did you know that cellulitis and Lymphedema are two peas in a pod?  Did any of these thoughts even cross your mind?  Were you worried for me?  Were you confident in your decision?  Did you even care about the outcome?

The 28 year-old woman writing this forgives you.  People make mistakes.  I have made mistakes.  I would hope if you read this that you would feel remorse and educate yourself.  However, the 14 year-old girl has not forgiven you yet.  Instead, the 28 year-old woman is imagining placing her arms around that 14 year-old and telling her it is okay.  That 14 year-old is hugging her mother tight.  She is trying to heal.

You see, that misdiagnosis changed her life forever.  That misdiagnosis was the beginning of the end of her softball career before it even began.  That misdiagnosis was the beginning of a life sentence with Lymphedema.  Your actions in less than fifteen minutes changed the course of that 14-year old girl’s life forever.  For that, she has a hard time forgiving you.  For that, a part of her hates you with every fiber of her being.

In the future, I would ask that you and others stop and listen to your patients.  Hear what they are saying.  I know it is hard, but try not to judge them.  They are frightened, alone, and they do not understand medicine the way you do.  If they did, they would be doctors.  But, they did go to you for help, and I hope that you help them.  I hope that you will heal them.  They deserve that much from a pediatrician.

For me, I have said my piece.  You hurt me in ways I did not believe possible.  You set into motion a sequence of events that none of us could stop.  You stole my childhood in less than fifteen minutes.  You made me believe that I was crazy for years.  You made me doubt medicine, and you made me have trust issues.  You broke me.

On the other hand, thank you.  Thank you for making me stronger.  Thank you for helping me realize that I can tackle anything thrown my way.  It is not how I would have wanted to learn this, but I will take it.  Thank you for making me realize that everyone is not infallible.  Thank you for making me see that everyone makes mistakes.

I will work on ultimately forgiving you.  But, I will never forget.  You see, the pain, both literally and figuratively, for me will never go away.  You will continue your life and treat others.  You will probably never read this or know the level of pain you have caused me and my family.  But, despite this, I will be stronger without your help.

I hope that you have become a better doctor, and a better person.  I wish you well.  I am closing this chapter of my life, and I am going to work on saying good-bye to you forever.  I am not going to allow your face to haunt me any longer.

Good-bye.

Sincerely,

Your bitter ex-patient