I thought I would share with you a post I made on the yahoo ISS page in October 2011. The page has about 200 members from around the world, almost all women, who suffer from ISS. They are an amazing group of supportive women who share their experiences, treatment options, and advice. Here is the post:
I was diagnosed in March 2011 and had my first dilation in April. Like most ofyou I have a lot of frustration over being misdiagnosed over the course of several years. The dilation worked but my stenosis is coming back and I am
having a hard time accepting that and dealing with my chronically hoarse voice and daily cough. Due to the proximity of the stenosis to my vocal cords I am not likely to have a functional voice if I opt for resection so I am having a hard time accepting that. I also have a lot of anxiety about the need for
upcoming bronchoscopies which, as all of you know, are not particularly pleasant. My doctor suggested that counseling may help and I thought it would be worth a shot.
So… I went to see a psychologist last week to see if she could offer me any advice on learning to accept the condition and on some relaxation techniques to help me deal with upcoming visits. We spent the hour chatting, she was delightful and I felt she was really listening to me. She said that it was important to know the cause of the condition. I explained the three primary
causes were 1. auto-immune (which i did not have) 2. traumatic intubation (whichi did not have) or 3. idiopathetic (no known cause). I told her mine is idiopathic.
With five minutes to go in the one hour session she got a huge smile on her face and told me that she knew the cause of my idiopathic subglottic stenosis. She said it was due the fact that I threw up in the classroom in 2nd grade and that was traumatic for me. She felt that counseling and processing my feelings over that vomitting incident would cure my condition.
She was confident that this was a psychological condition which she could easily fix. Needless to say I am not going back!!!
If any of you have any tips on how to relieve anxiety for upcoming appointments, please share. Because all of you know exactly what I am going through, I feel like your advice will likely be better (and cheaper) than a psychologist.