I’ve been suffering both physically and mentally these past few days. I think I was infected with another stomach bug the Monday before Christmas and for the past nine days, I lost all progress that I had been making with my digestive system in the last 2 months. The intense abdominal pain and diarrhea that I had suffered for the last 2.5 years returned. (The fact that I ingested several things on Christmas that are not Autoimmune Paleo approved didn’t help either, and left me feeling like I still have a very long way to go in terms of healing my digestive system alone). And yesterday, my visit with a new primary care physician left me feeling very depressed. She was no more sympathetic or compassionate than the last one. She did not want to repeat any blood work “because nothing would be different than it was in August”. She blamed the massive amount of hair I have been losing for the past 2 months on my new diet and did not want to have my T3 tested like the last doctor. “Why do you want that?” she asked.
“Because sometimes, T4 is not converted to T3,” I said. I told her I wanted to have a full thyroid panel done (free T3, reverse T3, etc), but she said insurance would not cover those tests.
She asked me if I was working and when I said no, asked “Why not?”. I realize that very few people can understand what it is like to have Chronic Fatigue Syndrome if they have not experienced it themselves, but I would hope that a doctor would at least be able to listen compassionately and try to understand. I had explained that I was sleeping 19 hours per day in the summer, that I was not able to even say “hello” to someone, that my brain fog was so strong that I could not read or reach out to anyone for help. “I felt paralyzed,” I told her. “I felt like I was dying.”
She had NOTHING to offer me. Her only suggestion was to see a GI and get a colonoscopy (which I do not want). I asked to see an infectious disease specialist, as I know that viruses are responsible for the onset of Chronic Fatigue Syndrome. She did not think that was necessary. She denied I had any problems with my adrenals and instead tried to make me feel like I had an eating disorder. “Have you been losing weight? Do you think you need to lose any more weight? What is your ideal weight?”. When I showed her the list of lab tests from the book the nutritionist I follow in California wrote, and asked her if she would consider taking any of them, she flipped to the cover, saw “The Loving Diet” and smiled dismissively. I quickly tried to defend the author, but realized neither I nor she had any power in this place. She asked what medications I was taking and I told her none- only vitamins. She wanted to know where I got these vitamins and what they were. I started to list some off the top of my head: Astragalus, Ashwaganda, Cat’s Claw, Vitamin B12, L-Glutamine…
“What are they for? I don’t know anything about these.”
I asked if there was anyone in the network who knew anything about Chronic Fatigue Syndrome. She said she didn’t know- that she would have to ask and get back to me later.
I went downstairs to register and wait to have my blood drawn. An anger rose in me about the medical establishment as a whole. More than 50 million Americans suffer from an autoimmune disorder and an estimated 2.5 million have Chronic Fatigue Syndrome. Western Medicine has NOTHING to offer these people. NOTHING. They are left to fend for themselves, are forgotten, and left to live the remainder of their lives in pain and an unfunctional state. I am grateful that I have found some resources that have started to help me, but I can’t help thinking about all those who haven’t. From my experience, I have learned that anything that falls outside of the standard training that doctors have received is immediately dismissed. Patients are not being listened to, and resources that they have discovered are rejected and actually blamed for their symptoms! (My first doctor tried to blame my vitamins and the second one tried to blame my diet! For the record, I have never eaten this many vegetables in my life and I have cut out many of the harmful foods I had been eating!). This kind of attitude is not only an unfortunate consequence, it is unacceptable and harmful. I have been learning a lot of science in these past couple of months, and most of it I hear about from a nutritionist who stays on top of all the latest research, works with people who suffer from autoimmune diseases, and who regularly attends trainings by knowledgeable doctors in the field. Had I not started the AutoImmune Paleo Diet, my brain would not be working well enough for me to write this now. While I still have a long way to go, I have brought my sleeping hours down to 12-14 hours per day from 16-19, cleared a great deal of my paralyzing brain fog, and started to heal my intestines. During this time, I have also read books that dispute much of what doctors have been taught. Most of the bloodwork that they are performing is completely meaningless. Private companies are now offering much more accurate tests in a number of areas, but these tests are not covered by insurance, are very expensive, and they are not testing what the doctors have been trained to look for. This doctor asked me why I wanted to be tested for Epstein Barr and not Lyme. “You were in areas with ticks. It is more likely you have that.” I simply told her that according to the research I had done, I was not worried about having Lyme. (Besides the fact that I did not have those particular symptoms, I now know that Lyme is also caused by viruses [not bacteria!], and is not even caused by ticks!).
I returned home three hours later feeling defeated, powerless, and no better off than I went in. I sunk back into a tired depression. Later that night, I listened to Marianne Williamson’s latest lecture. To my surprise, she was much softer and more empathetic than usual. In response to someone’s question about constantly feeling depressed and anxious, she mentioned a study by an anthropologist on depressed chimpanzees. As in humans, a similar percentage of chimpanzees display characteristics of depression such as social withdrawal, hyper-vigilence, trouble sleeping, etc.. In this study, the chimpanzees who displayed depressed qualities were physical removed from their tribe. Marianne asked the audience what they thought happened to the remaining chimps when no longer around their depressed members after the researchers returned within a year.
It turned out that all of the remaining chimps were found dead! It was hypothesized that the depressed chimps served as a warning system to the others! They were the ones who were watching for predators, who stayed up and were more vigilant. Without them, there was no one to sound an alarm!
This story instantly perked me up and reminded me that my feelings were valid. There was a good reason I was feeling this way! I also remembered a similar story that Glennon Doyle Melton talks about: canaries in the coal mines. In the old days, miners used to take caged canaries down with them in the mines. When the canaries stopped singing, the miners knew the air was getting too toxic to breathe and that they would die if they didn’t get out.
Sensitive people who easily get depressed are the world’s alarm system! We know when something is wrong. There are a lot of harmful things happening on the earth right now, and one of them is the lack of attention being paid to the toxins in our environment and in our food, as well as the propagation and mutation of viruses that are making us sick. Right now, 1 in 50 children are autistic. It is projected that in the year 2030, which is only 15 short years away, 1 in 2 children will be autistic! This is a staggering figure! The children are warning us. We NEED to listen. Women have also been historically dismissed and labeled crazy for their physical symptoms. 70 years ago, women did not suffer from the menopause systems they do today. The problem is NOT women’s hormones. The problem is the radiation and toxicity that our earth is filled with today. Today, 20 and 30 year old women are experiencing the symptoms of menopause! We can no longer ignore these warnings!
The first thing that we need to do to begin to address these issues is to actually hear one another with complete openness and a beginner’s mind in order to gain an understanding of the root causes behind these diseases. There is no room for ego, no room for an “I know more than you because I hold an MD and you do not.” We must listen to those who are presently struggling with chronic illnesses, to stay on top of the latest research studies, to hear what those who are working with chronically ill patients are learning from the use of supplements, nutrition, and perception changes. The only way that we can begin to heal the earth and ourselves is to open our hearts fully so we can learn from one another and make changes to reverse the harm that has been done. Our emotions are valid. They are telling us very important things.