Written mid October 2020
A few weeks ago, I sat down and wrote a blog entry and it started off like this:
As I sit on my couch on this beautiful Thanksgiving Monday I am very conscious of the fact that I have much to be grateful for.
During these COVID times, being Canadian is a gift and I am well aware that my own personal situation could be so much worse. The one thing that I have had to struggle and come to terms with is how disengaged the majority of the health care professionals I have interacted with since the onset of my symptoms back in May have been.
Unlike the majority of people, I have never tested positive for the virus. In the beginning, this was comforting and reassuring as I did not want to be “one of those people”. As my symptoms intensified (total loss of taste and smell; extreme fatigue; more pronounced pain; decreased lung capacity; body rash and a constant loud ringing in my ears), I slowly came to my own conclusion that based on articles I have read in the Globe and Mail and National Post and interviews I have listened to on CBC radio, I am a COVID Long Hauler with a false negative result. The onset, intensification and duration of this feeling of unwellness like I have never felt before could not be my allergies, asthma, bronchitis or any other unexplained virus and this is no coincidence.
I then continued on, sharing my own personal experience over the past five months and why I had become so disillusioned with the health care system.
My first encounter with a physician at a walk in COVID clinic was disheartening. Without even listening to my lungs she tried to convince me that it was my allergies simply based on the redness in my eyes. The fact that I couldn’t do physical activity or work, two things that I thrive on, were totally disregarded and she was prepared to send me on my merry way with a prescription for a nasal spray. I questioned her judgement and she reluctantly listened to my heart and lungs. After an x-ray, I welcomed her diagnosis of bronchitis and eagerly awaited positive effects from the antibiotics. Alas, nothing changed and in fact I started to feel worse.
Over these past months, I have had a monthly phone consultation with my physician of 25 years. Initially, her advice was to self isolate for 14 days and wait for the symptoms to go away. Unfortunately, the feeling of unwellness persisted and a fearfulness set in. One day, in a moment of desperation and with encouragement from my husband and kids, I went to our local emergency. The admitting nurse looked at me and told me there wasn’t much they would be able to do for me suggesting that I book an appointment for a COVID test and try taking an antihistamine.
When my symptoms persisted, my physician suggested that I return to the emerge so that I could be seen by one of her colleagues. If I went in first thing on a Saturday morning, I would be seen quickly enough to check out my rash and do some blood work to rule out any other serious illness. Much to my delight, I was greeted by a lovely nurse who performed a COVID test right away. Within the first half hour, I was seen by a resident who listened attentively to my story and then said matter of factly that it couldn’t possibly be COVID because my cough was wet not dry. Following another x ray of my lungs and some blood work, I waited in a tiny sealed off area for 7 long hours. The attending physician concluded that the ringing in my ears was due to a build up of wax (in fact the two things are not related) and assured me that the nurse would clean them before I left. My blood work indicated elevated muscle enzymes which was strange but no cause for concern and she reassured me I was good to go and this too would pass. When I finally got home, I googled lab work abnormalities for COVID patients and elevated muscle enzymes was on the list. Go figure.
For several months, I continued to have contact with my physician over the phone and gradually came to realize that she did not believe that I had COVID. I mean as she said to me, where would I have picked it up? According to her there were so few cases in our region (at the time) and I had now tested negative three times so it couldn’t possibly be COVID. Funny thing is that up until just recently, my physician refused to see me in person. Even my husband wasn’t allowed to pick up my medical certificate at the clinic and I was told that they would have to mail it to me. Why? My symptoms.
I was initially angry with my physician’s reaction. Her refusal to validate my self-assessment disappointed me. However, I realized that continuing to harbour negative feelings would be counter-productive to my healing.
I have since seen her in person and although we never attached an official diagnosis to my symptoms, she did comment at one point that it had been a “long haul” which brought a smile to my face.
Several weeks ago, I went to see an internist. This visit was probably the icing on the cake for me and I realized that medically speaking in the traditional sense, I am on my own. Although my symptoms aren’t consistent with asthma, he offered to run more tests for it, adding that an asthma diagnosis is something he could actually work with. When I asked for an antibody test for COVID, he refused as I had tested negative three times. I explained to him that from what I had read I strongly believed that I was a COVID Long hauler and he looked me straight in the eyes and said to “stop reading dear…there is medical and there is non medical”, insinuating that I was some crazy woman suffering from self inflicted symptoms conjured up in my imagination, based on things that I have read in The National Enquirer!
Given that we were both wearing masks, I must admit I was having difficulty understanding some of what he was saying. Early on in our conversation, I thought I had heard him call me “dear” but I wasn’t 100% sure. I told him my story from the beginning and I knew I was starting to irritate him as I referred to this feeling of “unwellness”. I said that although things had definitely improved immensely compared to how I had felt this past summer, I still had general pain that cames in waves and I absolutely do not feel like my old self. After checking my throat, and having me do a few deep knee bends with no explanation, he asked me to sit down to explain the situation.
Well “dear” I am going to break this into two parts for you so you can understand…
This guy went on to tell me that the majority of the patients he saw with similar symptoms to mine were women. He explained that sometimes the body reacts to emotions and psychological imbalance, which didn’t actually seem to be my case mind you but that everything that I had described to him was strange and inexplicable.
Leaving this consultation, I vowed to lower my expectations of the medical system and explore non-traditional options.
I must admit that it took me a few days to recover from that visit. I was angry and disillusioned. All I could think about was how many other people were receiving this same type of treatment, or lack thereof.
Thankfully, I know my body and the symptoms I have experienced these past months are real .Whether or not I feel supported by traditional health care providers is irrelevant. Everyone is struggling to adapt to this new world we are experiencing and this includes the professionals I have interacted with throughout this journey.
However, as Nadine Sander – Green writes in her Globe and Mail article – Overlooked Symptoms “As uncomfortable as it is, we need to stop looking away from what we don’t understand. We need to believe patients […] Perhaps more important, we need a cultural shift toward radical empathy, so whatever the illness, no one feels […]: silenced and hopeless.”
I have made the conscious decision to take my health into my own hands. I am focused on creating life balance which includes: a healthy diet incorporating anti- inflammatory foods; physical activity (yin and restorative yoga, daily walks, gradual introduction of cardio activity); daily meditation; non traditional health care practices (acupuncture; healing touch; Tibetan bowls; cranial massage); journaling; and my latest form of therapy…knitting!
By far, my greatest discovery is the art of mindfulness.
Although I still feel pain in my body, I am learning ways to let that go.
My mind is an amazing tool, and every day I am exploring its connectedness to the healing process. Taking a moment to detangle untangle ourselves from the web of everyday life (work, relationships, social media etc.) and breathing consciously is powerful. The effects of this daily ritual can pervade one’s sense of well being. The more I practice, the better I feel and this my friends is a beautiful thing. The purity of our intention should be unconditional loving kindness (based on Ayya’s podcast which I’ve referred to in previous blogs), regardless of the situation and the parties involved (this includes my friend the internist!). I have vowed to make a conscious effort to live my life this way moving forward and challenge you to do the same!