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I suppose family experience's will be different for all of us. I'm sure most of our families do not understand what we are goin through. Denial is the first and foremost step. Seeing that our personalities and bodies have changed but not willing to acknowledge the pain and suffering. To lie to ourselves and one another is easier. So our families go on living and lieing. They see the weight gain, dry skin, hair loss, fatigue etc but are not willing to accept them. The medical system in most cases does not back our claims. They make us look like raving lunactics with an axe to grind. Who else would get their nerve's cut for a benign condition. What do people think when they hear the story?? I ask myself this all the time, what would I think if I wasn't in this postion. Most likely I would take the medical system at it's word. So who's gonna feel sympathy for us. Who's going to understand, be willing to show us empathy.

My story is a lill different than your's erika. My mom told me not to get the surgery done. She had heard of a girl who had the surgery and wouldn't get off the couch anymore. This girl was a straight A university student before the surgery. My mom's word's haunt me to this day. I also cancelled my surgery but not in time according to my doctor ( which was a big fat lie). I had head injuries that caused my hands to sweat alot more than they did prior. I went to the thoracic specialist( not knowing much about medicine) thinking he could tell me why. Tv also played a part in my ets. 20/20 aired a show and my friend told me about it. That's when I went and saw my family doctor about ets. Lill did I know all these steps, head injuries, increased sweating, tv show would lead to a loss of life. I do call it a loss of life because I'm just a mere fraction of who I use to be.

TO me the most astonishing things were the lack of respect shown in my life by the people I had given a hand to while I was healthy. I've realized most people want other's to fail in life. I didn't realize these thing's because from my own perspective, I wish other's to succeed even at my own determent at times.

Ets has at least opened my eyes to a very cruel world. I knew it was there before ets, but never was wounded enough to be prey. Now I know what being at the bottom of the totem pole is like.

As i'm sure many of you do as well.