Dear Pen Friend,

I hope you’ve had a good week. I feel that all my weeks are good – even though I’m focused on grief so much these days. And, truthfully it is a heavy load to bear. Bearing it is making me stronger already, though – I can feel it. So I’m going to keep going. I’ve even made a list of things I know I haven’t properly mourned. The events happened, and I moved on as quickly as I could from them. Didn’t grieve. And, so they linger… I thank you for listening to me while I get them out so I can let them go.

Today’s “griefantsy” (Do we like that word? I feel like I’m looking at grief that’s been making me antsy…. Maybe if I spell it differently – GRIEFANCY. I see “fancy” first. What about you? That feels nicer than seeing “grief” sitting there on it’s own. Here, it’s like the 2 words are sharing the “f”…. like neighbors sharing a wall.) Today’s griefancy is that I’ve lost the placebo effect from our medical system. Do you know about the placebo effect? I learned about the significance of it while working at Pfizer Pharmaceuticals. (I had a long-term temp job there in the 90s verifying and entering data connected to the company’s drug studies. I’ve read some stuff….)

I found the placebo effect to be endlessly fascinating. Essentially, it’s HOPE at work, and it can initiate a healing response within the body. It’s believed that about 1/3 of people are healed simply by believing that the “medicine” – whatever it is – is working. The body wants to heal, but sometimes it needs is a little time. Dr. Andrew Weil put it this way last weekend at a conference I attended: “A doctor’s true job is to distract the patient long enough for the body to have time to heal.” I didn’t have doctors like that. The doctors I had all pushed tons of medications, and surgeries, and tests (oh my!) on me. They often scared me, but they didn’t heal me. Consequently, over the years, their ineffective treatments killed any placebo effect they (or their treatments) might have held for me.

I believe that a person’s life inadvertently makes them an “expert” in something. My life has given me expertise in understanding our current medical system, how we got here, and where we need to focus on in order to improve what’s not working and maintain what is. I’m an expert, but very few within that system want to hear what a person like me has to say, and most consumers of it are afraid to try something not “proven” or advocated by the medical industry. Mostly I try to stay silent on the whole subject now – unless asked. I’ve learned that people are wary of “experts” like me. ‘What’s my agenda?’ they wonder.

For short while, I did have an agenda. I wanted to try to make a living off of my expertise. But, then people were really wary. What were my credentials? Where were the double-blind studies backing up my claims? Many people in our society will only trust what an M.D. says. In my opinion, that’s a really bad idea for long-term personal safety. Again, I’m an expert, and I feel no discomfort in reiterating that proclamation.

What makes me such an expert, you ask, Dear Pen Friend? Well, let me tell you! Simply: My life. The whole of it has taught me, including actual schooling. Starting from infancy and continually progressing until now, I have been studying the United States medical system from every angle. From what it does and why, to how we got here, I have a deeply experienced and fully researched understanding of the whole industry. How did I get such a layered and informed position?

Well, first and foremost, my family is and was a disaster health-wise. In many other ways they are incredibly successful, but not when it comes to achieving good health. They are a sickly crowd. From the oldest ones to the youngest ones, there is an incredibly long list of ailments. Growing up I remember talking to relatives about their health like most people discuss the weather. When I met someone for the first time it often went something like this: “Come! Meet Cousin Dolly. She needs your help at mealtimes. She has no sense of smell or taste. Did you know smell is connected to taste? She sometimes eats spoiled food and doesn’t know it. Just help her while she’s here.”

So, I’d sit with Dolly, and she’d tell me what it was like to lose smell and taste, and then what it was like to grow older without them. She was in her early 90s. She couldn’t see much either, so sometimes she couldn’t see helpful spoilage indicators like mold. She liked having someone to eat with so she had someone to smell/look for freshness, and also because she had no real desire to eat since her smell and taste were gone. When she had company she ate to be social. (But, she made certain to say she did NOT want to go into a “home”!)

Or, there was Uncle Dale. He’d lived in a “home” for decades. He had Down syndrome and was institutionalized very early on. Luckily for him, the State Home in our town seemed to be very kind and caring toward Dale. I don’t know how you couldn’t be! I sat and talked with Dale on many occasions. He was delightful. And, I learned about Down syndrome directly from him. Afterward I went home and read what others had to add to the conversation. I educated myself about Down syndrome because I loved my Uncle Dale.

With each new relative and their presented ailment, my knowledge grew. And, as I heard their stories of having multiple sclerosis or recovering after a stroke, I saw how medicine was changing. To add richness to my experience, by the age of 10, I, too, had entered into the family practice of enduring illness (or the aftermath of it). By age 10 I had my own team of doctors, including several specialists! WOW! I was fancy early! (Oh, look! Another reason for “griefancy”…. think it will take off?) I also learned what it was to be a patient without agency. After my experiences, I don’t think someone should be able to finish medical school without spending a year steeped in stories from patients. A doctor’s ignorance about patient-centered compassionate care is all of our loss.

By the time I was in my late twenties, I was a medical addict. I believed that doctors could “fix” whatever was wrong with me. I had an entire team of physicians to deal with my perceived defective, broken body. I even employed some of the biggest “stars” in medicine to consult on my case. I diligently tried to follow their edicts, and I trusted that each new pill, surgery, test, or “procedure” would have the answer for me. I spent thousands of dollars – many times when I was without insurance – in order to allow them to test out their theories as to what would make me feel better.

But, under the care of my “star” team, I was getting sicker.

And then, life taught me again. Long story short, I was feeling horrible all day, every day. I had felt that way for years. Then, I was dangled a carrot. My dream role! If I lost a ton of weight. But, there was time (a year), so I thought I could do it. At the time, Dr. Oz was newly on the Oprah scene. He advised eliminating foods out of one’s diet that contained certain additives. So, as per his advice, I stopped eating them. And, I walked. Oh, and I had HOPE. (Dream role, remember?) And, low and behold it was a magical combination that started making all sorts of physical healing. Within 2 years of walking, no processed foods, and hope, I had nothing physically wrong with me for the first time in over 25 years! I had followed advice from a TV doctor who had never met me, and it had helped to heal me – along with a bunch of other things I added to the mix.

So, I told my fancy team of physicians my story. And none of them wanted to hear it. (Keep in mind, this was over 10 years ago now, and doctors have come a long way, but they still have so FAR to go.) They all acted like it was mysterious as to why I was suddenly so well. They advised me to keep watching for the sicknesses to return. When I tried to tell them I could specifically point to those things that had healed me – and what hadn’t – then we were really at an impasse. Their bag of tricks hadn’t done it. Mine had, and most of the stuff was free. Our medical system doesn’t know how to make money off of medicine like mine.

With each year the medical industry is opening itself up a teeny, tiny bit to the things in my medicine bag. But, they are still way too far behind experts like I. ‘How do I know,’ you ask? I’ve been spying from the inside, only this time as a patient advocate. (For the past few years I have had friends or family members that have needed my help travelling through the medical maze.) I hear the doctor’s sales pitches, and I watch their scare tactics in play. I see how sometimes, due to a patient’s location, there aren’t a ton of great options and so they have to work with a rigid, non-listening doctor who would prefer that they took their prescription slip, paid the bill, and went on their way. I see the arrogance still rampant within the industry that prevents fully listening to patients’ stories.

A doctor tells me to do something, and I immediately consult at least 5 other sources (not just doctors, but a couple of those, too) before agreeing to their suggested course of treatment. I’ve seen too much. And it’s killed my ability to believe that our current medical industry can heal me, or others, from very much. Doctors like Mehmet Oz and Andrew Weil, who believe that food is medicine and the body needs time to heal, are few and far between, unfortunately.

Any ideas what I can do with all this expertise, dear friend? I keep trying to figure out how to share it with more people in a way that’s useful. I guess I’ll keep thinking. You let me know if you come up with something?

Until next time,

Your Pal, The (life-trained) Medical Expert