I wish I could put into words how terrifying the healthcare system here in the United States can be and how inept so many people are in the field and how oblivious, stubborn and condescending so many of the doctors can be. Don’t get me wrong, I have the utmost respect for this field. I am fascinated by much of it. I wanted to be a doctor, then a physician’s assistant (PA), then a registered dietitian (RD), then a registered nurse (RN). I took all the prerequisites, I volunteered at hospitals, I applied to many schools and got in… But then my life took a different road.
I knew, from working in the hospital, how despicable the drug companies are and how backwards the system is, as a whole. They make us sick throughout our lives ~ from the way grocery stores are set up to the advertisements on tv ~ and they keep us sick to profit from the drugs and the huge hospital machines that feed patients through on conveyor belts. I have seen almost twenty different doctors this year ~ usually only once. I saw a rheumatologist for a half hour who charged over $500. When I worked in the hospital, my job was to call drug companies to try to secure discounts for people who were leaving the cardiac ICU. These were generally elderly people with heart conditions and huge medical bills that needed these drugs to survive ~ to stay alive. They weren’t working, obviously, and usually their spouses were retired or deceased. I was meant to provide evidence to the drug companies that these patients warranted discounts. Disgusting. Heart-wrenching. In retrospect, I am happy my career in the healthcare field didn’t work out. Who wants to be around sick people all the time? I’d have to do my job wearing a mask.
Anyway, I need to write a book about all the mistakes that are made when you are a patient – lab mistakes, appointment mistakes, paperwork mistakes – and about all the days that are wasted showering, driving, parking, walking around hospitals, waiting in rooms full of sick people, filling out forms that NO ONE looks at, explaining the same symptoms over and over again, getting ten vials of blood drawn so the same tests can be run again because no matter how many times you sign release forms and call clinics to ask them to fax results to your PCP, it doesn’t happen … WASTED days because no one can appreciate the time and energy and money that disappears with every doctor appointment. WASTED days because you never actually get an answer or even a theory or a call back, you are just told to make another appointment for a follow up. WASTED precious, precious days. When you think you might die, every day becomes precious.
So, let me tell you about my appointment at the chronic fatigue clinic – a specialty clinic at a very large hospital in a very large city. A city ranked 4th in the country for rehabilitation, 6th in the country for endocrinology, 8th in cancer care, 16th in neurology and neurosurgery. Let me tell you what a joke my wasted day was.
Over two months ago, they sent me a very thick booklet, chock full of questions which took me almost two weeks to complete – with many breaks because it was so detailed and tedious. My appointment finally arrives with the clinic that specialises in the condition that I supposedly have. I’m thinking, “Finally I get to talk to experts and get some up-to-the-minute info on cutting edge research and a plan of action for my recovery going forward!” Nope. After waiting half an hour after my appointment time (which isn’t too long by most clinics’ standard wait times), I was given a work up by an RN: blood pressure, allergies, weight etc. She also tested my tear production.
Then a PA asked me all about my symptoms. I was told that this PA, who was very nice, sees every patient first, but, I swear to god, she came across as if she had never encountered anyone with ME/ CFS.
“I don’t know why you don’t wake up refreshed when you do get enough sleep”, she says. Seriously? She refers me to a sleep clinic (they have no appointments for months) and tells me to take epsom salt baths and eat turkey. Great.
“You are tired during the day?”, she asks. Tired? On a bad day? No, I’m not tired. I’m incapacitated. I’m sick, I’m shaky, I’m cement. I’m unable to move or eat or talk. She says, “You can’t eat because you are sick? What foods can’t you eat?” No, I can’t eat because the act of picking up a fork, chewing and swallowing is too much for my body to handle! Because, on those days, I’m trying not to die, so eating isn’t really my priority.
After spending 45 minutes going through my year, my symptoms, my hell, she says quizzically, “Oh, you have muscle pain?” Jesus! Yes! Haven’t you been listening? I am in pain from head to toe, every day, some days better than others. She tells me to try acupuncture, massage, cupping and eating turmeric. Wow, this is the expert in chronic fatigue syndrome?
For my low blood pressure, she tells me repeatedly to eat pizza, chips and pickles. She says, “Bad for us, good for you!” Pizza, chips and pickles? Can’t I just add salt to healthy foods? How about salt on my veggies or salt on my eggs? I have a Rx for pizza??
I tell her I started LDN and she says skeptically, “I used to use naltrexone years ago for drug addicts, but I stopped.”
Then I had a “psychiatric exam”. This was ridiculous. It was a lengthy computer questionnaire that was read to me by someone in a cramped, hot office. Most of the questions I had already answered in the tome that was sent to me to fill out months ago and all of the questions I could have easily completed at home ~ they were yes and no answers. Have you had a period of two weeks or more when you have felt sad, guilty or worthless? This sort of bullshit. It took over an hour and I kept asking her, why couldn’t this have been sent to me to do in advance? And, who on this earth is ever going to look at the answers?! No one.
They took blood to test for vitamin B12 and zinc and something else (useless) and then they made me an appointment with the actual DOCTOR that is in charge at the CFS clinic! So, this was just a fact-gathering appointment and I’m really going to be told nothing? No one is going to ask me what I have been tested for in the past, discuss what happens when you have ME, what they know about this condition, what fits with my symptoms, what doesn’t, what the prognosis is, what treatments and drugs they have found success with… anything?? Nobody is going to say, “I’m so sorry you are going through this and don’t lose hope, we’ve had a lot of success treating people with this condition.” Fucking anything?? Nope. And, the best part? The first appointment with the clinic doctor is in January. FIVE months from now. 14 months since my hell began.
All in all, from the time I took a shower until the time I got home, it was six wasted hours. No hope, no relief, no tests done, no information, no display of expertise, no advice… unless you count massage and turkey. I’m exhausted, frustrated, disgusted… and, unfortunately, pretty hopeless.