I don't have this condition, but suffer from another"invisible illness". Fibromyalgia is treated exactly the same way. It is estimated that there may be up to ten million people with fibro. Yet, there is very little funding or massive research.
This condition cost me almost everything. I lost the career I loved and depended on. I lost the secure future I had planned for my family. I lost my dignity and self worth. I lost myself within my own pain.
I have had Drs pill pop me to the point of being a zombie, call me a liar, try and force unsafe procedures on me, dismiss me as crazy.
I was lucky to find a phenomenal Dr that believed me. She saw the pain I was in. She worked diligently to help me. If not for her, I would have been dead. Sadly by my own hand.
I wanted to end it all but couldn't put my child through that. So I hung on. Then year after year, I began to think if i was doing her more harm than good.
Yes, I was one of the ones who was caught between the fine line of being lucky to be alive, and being unlucky to be alive.
With the help of a few incredible Drs, I am doing better. The life I had and planned on is gone. Now I am rebuilding. But everytime I am introduced to a new Dr, I feel like I am having a panic attack. "They won't believe me", "they will think Im making this up" etc runs through my head.
I have often thought of moving to somewhere warm to feel better. But too afraid to end up somewhere where I will lose my Dr that believes me, and end up with some Dr that thinks I'm just a complaining middle aged woman.
MY hope is that one day we will find the cure, and going to the Dr won't be the stressful and shameful event it currently is. Not because I'm sick, but because they will become educated.
Recent Comments
This condition cost me almost everything. I lost the career I loved and depended on. I lost the secure future I had planned for my family. I lost my dignity and self worth. I lost myself within my own pain.
I have had Drs pill pop me to the point of being a zombie, call me a liar, try and force unsafe procedures on me, dismiss me as crazy.
I was lucky to find a phenomenal Dr that believed me. She saw the pain I was in. She worked diligently to help me. If not for her, I would have been dead. Sadly by my own hand.
I wanted to end it all but couldn't put my child through that. So I hung on. Then year after year, I began to think if i was doing her more harm than good.
Yes, I was one of the ones who was caught between the fine line of being lucky to be alive, and being unlucky to be alive.
With the help of a few incredible Drs, I am doing better. The life I had and planned on is gone. Now I am rebuilding. But everytime I am introduced to a new Dr, I feel like I am having a panic attack. "They won't believe me", "they will think Im making this up" etc runs through my head.
I have often thought of moving to somewhere warm to feel better. But too afraid to end up somewhere where I will lose my Dr that believes me, and end up with some Dr that thinks I'm just a complaining middle aged woman.
MY hope is that one day we will find the cure, and going to the Dr won't be the stressful and shameful event it currently is. Not because I'm sick, but because they will become educated.