WARNING:trigger alert. This post could cause fear, anger or sadness.
I just finished watching the movie, The Normal Heart. It took me on a journey of so many intense emotions: outrage that our government didn’t do more sooner, amazement at the courage of the men and women who fought for funding and research, and grief over having to relieve the deep loss of my dearest friend Ken Camenson to AIDS in 1991. We were both 33 when he died.
I am curled up on the couch at the house I am staying at in Tennessee. This is day three of a wave of intense bone and muscle pain, weakness and dizziness and of course, my never-ending tingling. I watched the movie and couldn’t help but wonder why those of us so badly harmed by a prescription drug that continues to be handed out by uneducated doctors to harm more people aren’t rallying together to protest and to educate. As I lie here on the couch with every bone in my back and chest, neck and hands aching, I can’t help but be angry that this illness so many of us have is being perpetrated on others every day. And other than those of us who have lost our jobs, our friends, sometimes our homes and all of our savings because we can’t work due this illness, no one seems to care. I think that is sometimes the hardest part of this horrible illness. No one, other than other benzo sufferers seem to care. There are no protests at city hall. There are no letters or calls to the mayor and the president. There is no civil disobedience. There are hardly any news reports at all about benzos. Why?
Why isn’t the fact that doctors cause this monstrous illness by prescribing a drug that mangles the brain in about 40% of the people who take it newsworthy? How many millions around the world have suffered over the past decades due to these drugs and how many have died because of them? Since I have started this blog I’ve stop counting the ones who died. It was too painful to keep count any more.
Dear Doctors, Dear Friends And Families… we are sick. We are hurting. We are tired. We were damaged by a medication given to us by a doctor we trusted took the Hippocratic oath seriously: First Do No Harm. We don’t want any others to have to suffer through this illness. We want doctors to listen to us. We want them to be educated about the brain damage these drugs cause. We want them to know that many of us are sick for years as our brains and bodies recover. We want to be heard. We want to be taken seriously. Or at least I do. I’m tired of being told by “experts” that withdrawal can’t last this long. I am tired of being told by “addiction specialists” that benzos can’t cause this degree of illness.
We live in the time when communication is instant and far-reaching. Why can’t we get the medical profession to take this illness that they cause seriously? I wrote this blog to help me hold on through an unimaginable nightmare I had to survive because I trusted my doctor and swallowed a pill as directed. Now I write in hopes that one day, my words and actions can help change the prescribing of benzos. I hope that one day enough of us will have genetic testing so we can understand why some of us suffer brain damage from these drugs and others don’t. I hope that one day, there will be no more benzo withdrawal, that people won’t take these drugs and risk the chance of getting sick from them, or dying from them.
What will it take to rally together enough voices to be heard? What will it take to make the doctors listen to us and to understand that they are the ones causing this?
I’m tired of waves of debilitating pain. I am over 3.5 years off of the drug and my body still has yet to totally recover. My 85-year-old parents drive across the country in 5 days. I took over two weeks to drive from San Fran to Tennessee and still it was too much for my body. I have to rest and recover. I continue to have to pay a price for attempting to live a normal life.
I am sad and outraged that this illness, benzo withdrawal syndrome, exists in a world where information rules our lives. By now, doctors should know the harm these drugs can cause. What will it take to get them to learn? Will we need to start litigation? Will it only be when we hit their wallets that they listen, because at least for now, it sure doesn’t seem like we are hitting their hearts. They don’t seem to care about the human suffering they cause. It’s hard to suffer from an illness that no one understands or cares about. We become invisible. It is as if our lives don’t matter. But they do. All of our lives matter.
I wish the FDA and the AMA thought so. I wish too that our friends and families understood better. It gets tiring fighting for a normal life all on your own.