Today I had to drive two hours to St Louis for a routine cardiology appointment that took a grand total of 25 minutes. Then I got back in my car and drove two hours home.
Lately, however, on Formspring, I’ve noticed a trend that I used to succumb to as well: the trend of downplaying physical illness or symptoms with the intention of avoiding any possible medical professional.
I understand that some people are raised this way, but my mom took me and my brother to the doctor whenever we needed it, and quite possibly whenever she needed it. And my doctor was a really nice guy, so I never learned any “I hate the medical profession” attitudes.
And then what happened? I went to college and the anorexia went from being a minor sideline issue to a life threatening condition. A constant presence that couldn’t be ignored, no matter how much I tried. Around the same time, I noticed that “things felt funny” in my chest. My heart “didn’t feel right.” I got dizzy; I fainted; I felt like my heart was beating ‘harder’ than it should. And then, one night when I felt particularly bad, I went to the emergency room. That was when I had my Sudden Cardiac Arrest (SCA) and flatlined. Now I realize how lucky I am to have been in an ER, next to a crash cart, when I had my SCA.
The doctor told me that if I wasn’t anorexic, my heart would have been fine and I wouldn’t have had a SCA and I wouldn’t feel my heart beating funny. He looked at my medical records with anorexia written throughout them, and sent me home without doing a single test on my heart. So I took all of my worries and all of my concerns and all of my doubts and questions and shoved them as deep inside of myself as I could. I blamed myself and felt extra guilty, and because I didn’t know at the time that I had the strength to recover from the eating disorder, I felt even worse because I thought I was condemning myself to a life of a weak heart that might very well give up on me.
I kept feeling “funny things” in my heart cavity. But I didn’t go to a doctor because I blamed myself. But when I entered recovery, I encountered a problem–I was at a healthy weight with no harmful behaviors and my heart was still doing all the “funny things” it had done while I was anorexic. now the problem was finding someone to listen to me and take me seriously. My regular doctor dismissed my cardiac fears, and I wasn’t yet aware that I had the right to see another doctor in the same medical practice.
Within one month of moving to the middle of Missouri, I had a new doctor–one who listened to my fears and did a couple minor tests. And then sent me to a cardiologist in St Louis. Who then booked me for surgery for an Implantable Cardioverter Defibrillator (ICD). All of those “funny things” that were part of my head? They were all symptoms of a very serious illness: Arrhythmogenic Right Ventricular Dysplasia. This is a genetic form of progressive, irreversible, untreatable cardiomyopathy. In layman’s terms: my heart is dying. The muscle cells of my right ventricle are dying and are being replaced by fat cells, which changes the shape and size of my ventricle, changing how my heart beats. There are things I can do to help keep my heartrate steady and slow, but nothing can change the progressive muscle death.
Why am I bringing this up? Because I’ve seen a few people on Facebook or Formspring mention how they know something is wrong, but their doctors won’t listen because of the eating disorder. It is true that an eating disorder can cause medical problems. But an eating disorder is not a concrete wall that prevents any and everything else from making the body unhealthy. You can still get headaches, digestive problems, cancer, heart attacks, kidney problems, and the cold and flu. You know your own body. Trust that body. If you know, deep down, that something is not right, talk to someone. If your doctor is an asshole and doesn’t listen, find a new doctor. I would probably not be alive today if I hadn’t found a new doctor after moving to Missouri.
So the four hour drive today was worth it. I know how Lily (my ICD) is doing. I talked to the doctor about certain medications. I asked about recent research findings. My heart is still beating. Some days stronger than others. I look down and see the scar from the ICD surgery and I feel a sense of peace, knowing I have an ICD inside of me in case I have another SCA. I also feel a sense of pride when I see that scar, because I know that I didn’t give up. It would have been easier to give up, but I have reasons to fight and I will not let those reasons go.