When I was first put on lorazepam for anxiety and insomnia in 1999, little if any information was available. I didn't have my first computer yet, and I doubt that Benzo Buddies was around yet. Since this experience, I have become a more informed consumer, and I feel it is important that all of us do the same in this era of "health and wellness" marketing.
Before the benzos, I was very health conscious and never even took aspirin. I swam and cycled almost daily and ate a very good diet. Other than the anxiety, I was a physical healthy person, and so much of the events that unfolded with my health were pretty bizarre and puzzling for myself and others in my life to understand.
Almost immediately after being put on the benzos, I started contracting very strange infections that seemed to take forever for me to shake. I almost died from a double parasite infection that I picked in Costa Rica. I was living with several other people, eating the same food and visiting the same locations. Not one of the other people I was with got so much as a sniffle. When I came back to the states I was so sick that it never occurred to me that it could be the benzos. I still was pretty clueless as to what systems the drug effected or that they could cause any sort of other problems related to the immune system.
Then in 2001 after about two years on the drug and still fighting some very nasty infections, I blacked out and fractured my left orbit bone. I was completely incapacitated for days, and the post concussive problems seemed to plague me for what seemed like an unreasonable amount of time. During this time, the head injury left me completely unable to work, and I ended up on disability.
For many people (myself included), there is no way to imagine how hard the disability system is to navigate until you have been through it. I am still not sure the formula they use to determine eligibility and award amount, and wouldn't even attempt to explain it to anyone. I was in bad shape when I applied, and I was so out of it that I can't even recall how I applied or who helped me. I was totally unprepared for the journey this would take me down as far as how the disability system is set up and how it has evolved since Obamacare and the pharmaceutical industry began to dictate our healthcare.
I think that disability is poorly represented in our culture, and rather than approaching it as a holistically sustainable program, we are trying to stop the financial hemorrhaging with a very dated tourniquet. Most of our funds for disability are funneled into the healthcare system because that is where most of the costs go for the disabled. Cognizant of how expensive medical care is after multiple E.R. visits and hospital stays, I realize that those costs do need to be accounted for and figured into the budget, but it's how the funds are being spent that bothers me the most. I have often wondered if I would have ever needed the disability system if I have never taken that first pill.
However, as someone that has survived benzo withdrawal and years in the disability system, it has given me reason to pause and change my perspective about how we're approaching this issues. I have done many, many days of reflecting during my withdrawal. The longer the symptoms went on, the longer I was painfully aware of how much just my case alone has cost the tax payer, all because I took one medication that I thought was safe. My guess is that it could be in the millions of dollars.
This was a frightening thought for me given the number of people that I know are being effected by these drugs and who are also on disability. One of the biggest problems with the disability system is that the people making policy for these programs are not impacted by them. If they were, they wouldn't expect a very sick person to be able to live on under $1000.00 per month.
If we consider Maslow's hierarchy of needs, with food, shelter and safety being the base of the pyramid, most people on disability are not even meeting those needs before we add in healthcare. This creates almost constant anxiety about basic survival needs being met for someone that is sick, and we have enough scientific information about what stress does to our health to know this is not a conducive circumstance for optimal healing.
When you consider how many people on disability are likely on at least one medication, we have to wonder how much of that money going to the disability system is actually going in Big Pharma's pocketbook. According to the Centers for Medicare and Medicaid, prescription drug spending increased 9.0% to $324.6 billion in 2015, slower than the 12.4% growth in 2014. Here are some other numbers that will make you feel better about your tax dollars. Medicare spending grew 4.5% to $646.2 billion in 2015, or 20 percent of total NHE (National Healthcare Expenditure Data). Medicaid spending grew 9.7% to $545.1 billion in 2015, or 17 percent of total NHE. Remember that disability is Medicaid not Medicare. Medicare is for the elderly and retired. That means that almost a third of taxes for disability go into the pockets of Big Pharma.
Here is an article that was written by the Benzodiazipine Information Coalition. "This syndrome, commonly referred to as Benzodiazepine Withdrawal Syndrome, results in short and long term mental and physical disability for at least 20% of people who take benzodiazepines as prescribed. There are currently 90 million prescriptions written for benzodiazepines in the U.S. alone. While the exact number of people disabled every year is unclear, what is evident are the thousands of individuals who have flooded online support groups and resources desperate for answers and looking for help—help that is often absent in their relationship with their medical providers. Currently, membership across the various online support groups is estimated to consist of more than 30,000 registered users and climbing."
After reading this article, I had to ask myself how many other people on disability ended up in the system because of something else like in my case with the head injury? How many of those people have not connected the dots like I have, that the benzodiazepines are likely the cause of many of the other health issues they have? The problem with this issue is that the drug is so addictive, that many people stay on them to avoid the horrible withdrawal. Because most doctors do not believe these drugs can cause the long term problems that they do, the people on them form a type of denial that goes with wanting to believe their doctors know more than other patients that have gone through the hell of coming off of these drugs.
The other dilemma with disability is, that you don't receive enough income to live, let alone to explore the many alternative options to manage stress and anxiety such as meditation, yoga, massage and many, many other self empowering and healing modalities. So, for many they become a disempowered prisoner of the system between the drugs and the poverty. As someone who is trying to find a way out of this system, you can trust me when I say it's not easy to do.
This was my main reason for starting this organization. We need a stronger base of alternative treatments to help that 30,000 people and climbing, that are reaching out to us online and looking for a way out of the system. Remember, those are just the ones that have figured out what is going on. We have a huge part of the population that is very much in the dark, but I'm here to tell you it CAN be done.