Brugada Girl ™

I was talking to my mother recently because I wasnt feeling well and also very sick of talking about my heart. She is a registered nurse. She knows as much as a Doctor, I swear! I always bother her with my medical questions and needs. She knows all about Brugada, my diagnosis and the ups and downs that come with it. Wait, what the hell “up” goes with Brugada? Anyway, where was I? After all, she is also a mother who has children with Brugada…me and my sister! She is very familiar with the worries us patients have. And do you know what her theory is? She believes that therapy or mental help should be mandatory with this diagnosis. I think thats an amazing idea!! The mental aspects of this syndrome are major points that I drive home. I let all the people who contact me know, that this is a heavy mental struggle as well as cardiac. What do I always say?…. Afraid to die but now afraid to live! Its not easy going through life afraid of your own shadow, or heart. Its not easy having this knowledge at all. Ive said knowledge is power? Yes, the knowledge to save a life.Your own life. But with that knowledge is sitting and waiting for that same life to be taken abruptly.Minute by minute, second by second, night after night, etc. Ive pondered many times whether life would be better if I invented a time machine, traveled into the past and decided to never seek out a doctor for my heart. Maybe dying young is in fact better than living old, neurotic and full of fear, afraid to move or breathe. I absolutely do agree that mental help/health should be an obligation. I think every person diagnosed and even family members should be told about the mental torment it brings on. We should be warned of this in advance. I think if patients knew it is completely normal and acceptable to be scared, angry, sad, crying, full of denial… maybe it would be a bit better. Maybe if we were told “Go right ahead and purge all those crazy emotions out! Its supposed to happen!”, we might feel better. What do you think? Do you think the psychological aspect of this diagnosis is forgotten? Do Doctors or the medical field even realize this is a problem? I wrote about it before in Brugada Makes You Mental. It is my most successful post and Im happy about that. But I believe more should be done. I believe patients and family members need to speak up and tell their Doctors “Hey this news is depressing! It is hard to swallow! Im scared to death!” Pun intended! How many patients wish they were never diagnosed in an attempt to save their sanity? I do! Isn’t that sad? You get to a point where you think a short life is better than a long life full of angst and despair? I was wondering what everyone thinks about this? Do you feel mental health should be addressed? Have you needed therapy or medication? Anti depressants or tranquilizers to cope? Speak out about it! Don’t suffer physically and emotionally. Claim as much of your life back as you can…