It was a glorious day to have our lunch break outdoors. Imagine my surprise to feel stinging on my shoulder. Since I was wearing a wide-necked peasant blouse and we were sitting under an olive tree in the courtyard, I presumed a bee got me. But repeatedly? Thus began my forty year journey with invisible disabilities.
We—my husband Joe, our seven and ten-year-old sons, and myself—lived on the Seminary campus overlooking San Francisco Bay in beautiful Marin County, California. I had worked as an office worker so Joe could complete his B.A. after he finished 4 years in the Air Force. I then worked in Library Services at the Seminary while Joe worked on his three-year master’s degree to be a pastor and Army Reserve Chaplain.
First Injury
Over the next few days, the stinging turned into severe back pain. When I could get in to see the doctor, she put me on complete bed rest and heavy doses of Tylenol and aspirin. I had torn “every muscle on the right side of my back from my waist to upper back.” After several months of bed rest, the doctor allowed me to return to work for an hour a day, gradually increasing the time. She also prescribed extremely mild exercises. It took a year to return to 95% of pre-injury normal. During that year, Joe and our sons took care of me as well as doing all the housework. Joe also continued studying for his master’s.
The medical community could not understand the reason for the injury, although they knew my job caused it. “Just one of those things!”, they said. Then—oh, no—the exact same injury occurred again one year later. And even though I stopped the activity sooner and followed the same treatment, the outcome was significantly different. Maybe 50% recovery.
Joe graduated at the end of that year. We moved to northeast Washington where he began his career. Our sons graduated high school there and went on to college. They are now both professional men with families of their own. Sometimes, I wonder if the hardships of growing up with a mom with serious limitations actually strengthened them.
First Diagnosis
Several years after Joe’s graduation, I came across information about post-polio syndrome, also known as PPS (1). It sounded like a reasonable diagnosis as I had had polio (from which I “fully” recovered) at age two. Doctors disagreed on the diagnosis of PPS. One specialist even said I didn’t have it, as he didn’t believe there was any such thing! Anyway, the symptoms never completely fit although it did explain the fatigability. It never quite explained why my back spasmed so easily. As the weakness and fatigability increased, my life became more limited and my family had to take up the slack. Friends helped us at times.
Second Diagnosis
Seventeen more years passed before we found the next piece of the puzzle: cervical and writer’s dystonia (2). Over the years, my right hand developed odd movements and became more difficult to control. My neck and shoulders got tight, causing pain at times. The doctor began Botox injections in my neck and shoulders, which gave me great relief. Botox, which paralyzes muscles, is only temporary and must be repeated every three months. Yuck! We left the hand alone since it wasn’t that bad. The medication we tried didn’t work.
The Last Major Diagnosis
Another four years passed, and Sjogren’s (3) entered my life. It usually only causes dryness issues, but once it goes beyond those glands it can affect anything in the body. Of course, it triggered other neurological problems–what else! It also caused Raynaud’s (4) and gastroparesis (5).
Even More
Somewhere along the line, dysphagia (6) and breathing muscle problems evolved. Polio slightly weakened my breathing muscles, but my lungs remain unaffected. Either polio, dystonia, or Sjogren’s caused the dysphagia.
A few years ago, the neurologist added the diagnosis of generalized dystonia, which means the dystonia is genetic. That answered the question about all the unusual, but not serious, oddities I experienced as far back as young childhood. I consider myself very blessed because most children born with generalized dystonia have a very severe form.
No one thing by itself would be disabling, but everything together is quite difficult to live with. Individually. each condition could be worked around but the combination makes for unique problems, some of which remain undiagnosed.
Medical definitions
(1) “Post-polio syndrome is a new condition that affects the survivors of polio decades after the acute illness of poliomyelitis. The major symptoms are pain, fatigue and weakness. New weakness is considered the hallmark of post-polio syndrome. Less commonly, survivors may have new sleep/breathing/swallowing problems and some survivors may also experience muscle atrophy or muscle wasting. http://www.post-polio.org/edu/pps.html
(2) Dystonia is a disorder that causes muscles in the body to contract and spasm involuntarily. Individuals who are affected by dystonia cannot control or predict the movement of their bodies. Symptoms of dystonia do not appear the same in every patient. Dystonia may affect a specific part of the body or many parts simultaneously. https://www.dystonia-foundation.org/
(3) Sjogren’s syndrome is a systemic autoimmune disease which primarily presents with dryness of mouth, eyes, and skin. It can cause profound fatigue, and can affect any organ in the body: the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. It often occurs with rheumatoid arthritis, lupus, or scleroderma. Sjogren’s increases the risk of lymphoma. Symptoms can be mild or debilitating; they can remain steady, worsen, or occasionally get better. https://www.sjogrens.org/home/about-sjogrens
(4) Raynaud’s is a vascular disease causing cold toes and fingers due to spasms of blood vessels. It may also affect lips, nose, or ears, but this is rare.
(5) Gastroparesis involves weakness of the muscles of the stomach, or the nerves controlling those muscles. It causes mild to severe digestive problems. Another name for it is slow stomach.
(6) Dysphagia, difficulty or discomfort in swallowing, can be as mild as feeling a lump in throat or as serious as the inability to swallow. Aspirating food is possible. Neurological disorders, including stroke, are a common cause.
About the Author
Carole Griffitts has lived with invisible disabilities for forty years.
She and her husband/caregiver live in northeast Washington state. They love nature, and she uses her scooter to sometimes accompany him on his hikes. She uses her laptop, called Expanded World, to connect with others. Her website, for and about people living with invisible disabilities, is www.navigatingthestorms.com.