I recently watched the Netflix movie ‘HEAL.’ It’s a film about the power of the mind over the body and how changing our thoughts about our own bodies and our health has a significant impact on our health. It also examines the need to make positive, sustained and healthy lifestyle changes like reducing stress, eating a healthy diet and staying positive in the face of a health crisis. Watching this movie was timely for me as I am also getting physical therapy right now for a long term chronic pain issue with my rib cage, an issue that no doctor could explain. During a recent therapy session my PT and I were talking health and doctors and the struggle patients have with not being heard. He also mentioned something that I could not stop thinking about when I watched ‘HEAL.’ He said that he wished doctors understood the power of their words, that patients too often and understandably, hang on what doctors tell them. So, if a doctor gives someone a diagnosis, then a patient starts defining themselves by that diagnosis and this is often when negativity and depression set in. Patients often then resign themselves to a life of discomfort and prescription management of their symptoms. Doctors do not generally teach patients to examine the power of their own attitudes or the importance of the mind-body connection.
The movie ‘HEAL’ was very much about this topic and it talked about accepting a diagnosis but not accepting the prognosis. I think this is exactly what my physical therapist meant when he said he wished that doctors understood the power of their words. In my own experience living with a chronic illness, I look back and remember how naive I was when I was first diagnosed. How important the person in that stupid white coat was to me. I was a novice and and I was scared. I had never heard of sarcoidosis before and at the time of my diagnosis, I was near needing supplemental oxygen. I was too young for that! My diagnosis was tricky as well. I had had several biopsies and they all came back as inconclusive. Finally, my pulmonologist decided that I should have an open lung surgery to remove tissue and determine the cause of my symptoms. At the time, I really didn’t know any better so I agreed. Now, I would ask for repeat less invasive biopsies. Just because they are inconclusive once doesn’t mean they will be again. I didn’t know that at the time.
I had my lung surgery on the right side. Seven years post surgery and I started having horrible right sided rib pain and to me it felt like my rib cage had caved in. The right side of my torso burned, was hypersensitive to touch, ached and I had constant stabbing pains. Looking back, I had had these pains after my surgery and they slowly, over time, got worse and worse. I have a ridiculously high pain threshold so I didn’t pay it much attention until this past year when it really started to limit my life. It was time to have it looked at. I started with my pulmonologist. It seemed the right place to start especially since I also noticed that this pain was making it harder for me to breath and she was the one who had ordered the lung surgery in the first place. She looked my ribs for half a second and told me…”Well, you’ve lost a lot of weight because of your sarcoidosis, so I think that’s all it is.” Really? Come on!
Now, I’m seven years into my diagnosis. I am no longer a novice. Her response, blowing off my pain, was unacceptable. In the past I would have taken it and just lived in pain. I wanted an answer, an understanding of the cause of my pain so I could figure how to go about treating it. I then went to my primary doctor who sent me down what I call a rabbit hole. That’s what doctors do when they don’t listen to you. I knew my pain was related to my ribs…I know my body. He sent me to have an ultrasound of all of my abdominal organs. It showed that my gall bladder was inflamed. Sarcoidosis is an inflammatory disease so the minute I hear that I have inflammation in an organ, I know it simply means my disease is at play. Unfortunately, sarcoidosis is a widely misunderstood disease and when I suggested that the inflammation might be from my inflammatory disease, he said he’d never heard of sarcoidosis being in the gall bladder. Sarcoidosis can show up in any organ. Ever heard of “Occam’s razor?” If you haven’t, it means that the simplest answer is often the right one or the simplest solution is often the right one.
My primary doctor decided that since my gall bladder was inflamed, I should have it further examined. He sent me for a very expensive and time consuming (2 and half hour) scan called a HIDA. It tests the function of the gall bladder, the ejection fraction, if you will…to see how well my gall bladder was emptying the junk it is supposed to filter through my body. Anyway, that test showed that my gall bladder injection fraction was 39%. This is low and shows that my gall bladder isn’t working at its max capacity. The magic percentage for removal is 35%. When I had my follow up appointment to discuss the test results, my doctor had no idea what to do with me. He told me I could see a surgeon about having it removed if I wanted to or not. He left it entirely up to me. Good thing I’m no longer a novice at this! I decided to go see the surgeon, not necessarily to have the gall bladder removed but, to get another, hopefully more educated opinion about it.
In the meantime, I could not stop thinking that all my primary doctor did was reveal a new problem and my rib pain was still not getting addressed. He not only left it up to me to decide if I wanted to see a surgeon about my gall bladder, when I pushed him about my rib pain, he said, “Well, you’ll just have to let me know if it’s sill a problem in the future.” His only answer to addressing it was to throw prescription medication at it, which I refused. I did not want my pain masked, I wanted an answer for the reason I was having the pain. The old me would have taken the medication, let it get me fat and feel miserable. Not anymore! What I understand now, in a fundamental way, that I did not understand seven years ago, is that doctors are there to provide advice based on their best medical education but I decide what treatment is appropriate for me. I will no longer simply settle on what a doctor says or suggests. I ask questions. I fully educate myself.
I went to see the surgeon. I didn’t need to have my gall bladder removed. I’m not having any symptoms that warrant it. She examined my ribs. She didn’t have to but she was really the first doctor to take a good look at them. I appreciated that. She sent me to a pain management doctor. I believe every speciality has its place. There are times pain needs to be managed by someone who really focuses on that and there are times pain cannot be explained but, I kept telling all of them that it WAS my rib cage…that I knew it was my rib cage and that I thought it had something to do with a long term complication of the open lung surgery that I had…Occam’s razor, right?
Chasing pain relief was never what I wanted. I wanted to know what was causing the pain. I knew something was wrong with my rib cage. I just knew it! After an alarming couple of meetings with the pain management doctor in which he went from deciding I have nerve damage and needed injections for that to having disc problems that didn’t show up on my MRI based simply on something I said, he went from wanting to give me nerve block shots in the intercostal nerves to wanting to give me steroid injections in my back…all without ever giving me a physical examination. I was already weary about seeing a pain management doctor. I had already expressed my concerns about invasive treatment, RX medication and the like. My gut kept telling me that there had to be an answer that might not require long term medical intervention through drugs. I finally got him to LOOK at my ribs. He noticed that the muscles were significantly atrophied. I asked if physical therapy might help. He said he didn’t think so but I could try it.
I’ve been in physical therapy now several weeks. The moment I was evaluated by the physical therapist, he knew exactly what was wrong with my ribs and how to address the pain. I have massive scar tissue build up all around the area where I had my open lung surgery. This scar tissue has adhered to the tissues, muscles and nerves in my torso making them function poorly and my torso has grown very week, also making breathing even more difficult. Over the past seven years I’ve slowly taught my body how to compensate for this and, meanwhile the problem has gotten worse. I stopped using those muscles properly because the scar tissue has compressed them. Physical therapy is helping me in a way no medication or injection ever could and, slowly, I am getting my life back. We are addressing the root cause of my pain by breaking up that scar tissue and rebuilding my muscles. We are solving a seven year mystery and all in a way that does not require prescription intervention and will be good for my body long term. The moment I left my physical therapy evaluation, I felt, hope. I am sure that feeling is also having a powerful impact on my progress because I am progressing faster than the therapists thought I would. I joke with them that I am an overachiever…which is true but, the power of hope that they gave me and the way it has impacted how I feel about my body has been the best medicine I could ever have received.
I’m glad I will no longer settle for what a doctor tells me. I’m glad that I’ve learned the importance of taking charge of my own medical care, that I’ve come to understand that on a very deep level, doctors should be our partners in health, not our dictators. While the movie ‘HEAL’ talked about accepting a diagnosis but not the prognosis, I sometimes think we shouldn’t accept the diagnosis either, not until we are fully informed and find doctors who treat us with the respect we deserve as patients. As patients, I also believe in the importance of self education and self advocacy. When you’re in desperate need due to pain, it can be hard to hang on to the idea that “White Coats” don’t have all the answers but in reality, they don’t. They need to listen to us too and when they don’t, we have every right to push back because finding the least invasive ways to address a medical issue are often the most healing and it’s too easy for doctors to throw prescriptions at us, label us as diseased (sometimes incorrectly) and move on to the next patient.
When we are educated about our bodies, our own health situation, when we listen to our own instincts, we are far more likely to have a positive outcome. When we take control, when we seek more than medicine but also look for hope in our healing, when we focus on gratitude and grace and the power of our own inner strength in addition to whatever medical intervention we might pursue, the chances are that we will feel better sooner and will be more in control of our own good health and destiny. Understanding all of my treatment options and having a fuller understanding of the risks and rewards of those options has become the roadmap that I now use to manage my health. I listen to the inner voice inside me that knows me and my body better than any “White Coat.” My disease no longer defines me but instead, is simply a part of me and while I don’t know what the future holds, one day at a time, I will continue to work on taking back my life and living was well as I can, knowing that ultimately, I control my own fate and there is great power in keeping my mind and body connected to one another.