September 14, 2020
A Runaway Train, A Diagnosis, and My Best Medicine
What do you do when you are sick, but doctors don’t believe you? You jump on the anxiety train, a runaway locomotive increasingly difficult to stop, continually accelerating.
That is what happened to me after 12 years of trying to determine why flu-like fatigue, with accompanying pain, grew greater in spite of quality sleep, exercise, and clean eating. I had never smoked; my alcohol consumption was nil.
I was married with two pre-school children plus a third in elementary school. I was working full-time in human services, as well as doing volunteer work related to my kids’ activities. My doctor said I was tired because I was a busy young mom. That made sense, yet in my heart I knew there was more to it than that. I was feeling something beyond “just” tired. A few long nights of sleep in a row never left me restored.
I respected and trusted my doctor. He assured me I was not suffering from any disease; I should not worry. I began to doubt, not my doctor, but myself. I started to think maybe I was a hypochondriac; that I was imagining physical symptoms. I began to have anxiety.
Ruminations about the unexplained symptoms came with increasing frequency until the thoughts were daily, then hourly. Soon enough, barely a few minutes would pass before my mind would take off on the wrong track. I began to have panic attacks.
My doctor convinced me the time had come for me to be placed on anti-depressants. An internal medicine specialist I had been referred to was the one to suggest it, but my doctor supported his recommendation.
I started the meds, but I requested a referral to a psychiatrist. I wanted an expert opinion. I could not be depressed. I had so many things that were good in my life. The psychiatrist evaluated me, declaring I was not depressed, but suffering from rational anxiety directly related to my medical situation.
After a few weeks, the meds kicked in, dulling my anxiety and panic. I decided to consult a physiotherapist for my soreness. After taking my history, she asked if I had ever been tested for Lupus. I had not. She encouraged me to ask for testing.
If I went back to my usual doctor I knew he would dismiss me as simply being anxious, so I went to a different clinic saying nothing of my anxiety or previous doctor visits. This was before medical records were linked on-line so it was easy to omit the information, to start fresh. The doctor ordered numerous blood tests; a few came back with red flags. I was sent to the nearest city for a consultation with a rheumatologist.
The rheumatologist did a brief physical exam focussing only on muscles and joints. He sent me off to the lab for specific rheumatologic testing. He did not expect anything but normal results. He assured me I was healthy; he had no concerns.
Days later, the rheumatologist’s office called to tell me there were abnormal lab results. I needed to return for a thorough physical exam. At that visit, the specialist began by looking in my mouth, which I thought was odd.
He then asked, “If I gave you a cracker right now, could you chew and swallow it without water?”
Struck by the oddness of his question, I nevertheless thought about it for a second then answered a certain “no”.
He told me my mouth was extremely dry, barely any saliva in it at all. I had never thought about it, but as he said it, I knew he was correct. Next he explained I tested positive for several antibodies for autoimmune connective tissue disease – ANA, SS-A, SS-B.
I had Sjogren’s.
I had a real disease, one showing up in blood work. Not an imaginary illness. Sjogren’s explained all my symptoms. Overwhelming relief flooded me.
The rheumatologist downplayed the potential seriousness of Sjogren’s, but soon enough I would learn of its systemic nature; its potential to affect all parts of the body. I learned Sjogren’s is chronic, incurable, with no standard treatment protocol. For reasons yet unknown, 90% of those affected are women.
I read everything I could about Sjogren’s, but the most valuable thing I learned wasn’t in a medical journal. It was inside me. I learned to trust my gut. I may not be a medical expert, but I am the expert of my body. I know when something is not right. I will never again doubt the voice inside me that whispers (shouts!) – “Something is wrong.”
Once I received a diagnosis, the panic attacks and anxiety vanished. I tapered off the anti-depressant. I have not needed it since.
I’ve become my best advocate. Physicians are human beings; they sometimes make mistakes, assumptions, judgements. I love a doctor who says “I don’t know.” That, I trust.
Like many other Sjogren’s patients, my initial diagnosis was followed by several others, including Autoimmune Liver Disease, Undifferentiated Connective Tissue Disease (with characteristics of both Lupus + Polymyositis). I will be on immune-suppressant medication for the rest of my life.
People find different paths to resilience; there is no magical road. I was determined to find a way I could be “okay”, even though unwell. I sought a way to “heal”, even when no cure could be found.
Attending several writing workshops facilitated by Eunice Scarfe, a champion of women writers, I heard the power of authentic, vulnerable, detailed writing, as woman after woman read their writing aloud. Feeling the release of getting my own words out of my head onto the page was rejuvenating.
Later, “Writing the Self” course instructor PhD Reinekke Lengelle’s gentle nudging encouraged me to be a more courageous writer. I learned in writing, like life, taking small steps can bring big gains. That it’s wise to tell one’s truth, especially to one’s self, both on and off the page. I discovered writing is my best medicine.