How I found out I was sick

I was sure I had broken my hand.

It was swollen and painful in the palm and knuckle area, so bad that I couldn’t make a fist without screaming in pain. It hurt to even let it swing as I walked. So I cradled it against my body and made an urgent call to my PCP.

Just couldn’t understand why it felt like I had used a punching bag without gloves. But I would have remembered that. Turns out I had not broken a bone; a few days of icing and anti-inflammatories took care of it. Given that the human mind can manufacture its own reality, I even began to imagine a situation where I must have banged it against a hard object.

But then the next week, it happened again. On the other side. This time it was my left wrist that felt the same way — broken, bruised and battered, hot, painful and swollen.

When I brought these and similar incidents up with my PCP, he admitted that they could not be written off as injuries or accidents but were probably a sign of something systemic. He thought I should see a rheumatologist — unfortunately, the specialist was not kindly disposed to answering questions — he was an elderly gentleman who made pronouncements with no discussion following them.

Taking matters into my own hands, I called the Rheumatology department at MGH and asked to make an appointment. The doctor who saw me soon after, was a young woman starting out in her career and I have been her patient since then. Blood work showed some anomalies and while my RH factor was negative, she was convinced I had rheumatoid arthritis, an autoimmune disease.

What happens to joints affected by rheumatoid arthritis? Rheumatoid arthritis (RA) results in inflammation of the joints and, in particular, the synovial membrane that covers them (synovitis). An overproduction of synovial fluid occurs, which causes joints to swell and the capsule to stretch. The symptomatic episodes are called flares and the joint becomes hot, red and painful. Left untreated, progressive inflammation from RA can destroy the cartilage and bone around affected joints. Severe loss of cartilage can lead to bones becoming deformed and fusing. This can cause the joint to become immobilized often ending in a joint replacement.

Since it is understood that autoimmune conditions like RA are due to a hyperactive immune system, the conventional wisdom is to use immunosuppressants to dampen it. That way it does not attack the body’s own joints. When my new rheumatologist initiated my treatment with two such drugs, I began to see small improvements. Her response was to increase the dosage and add a third. It is the gold standard for rheumatoid arthritis treatment: sulfasalazine, hydroxychloroquine and methotrexate.

It was not widely recognized until the 1950s, that an immune response could be developed not only against foreign pathogens but also against the self, one’s own body. That’s because in 1901, Paul Ehrlich, a German physician, had coined the term “horror autotoxicus” to emphasize that the body would not and could not poison or attack itself. As a result, it was not studied further. But in the mid fifties, Noel Rose, a third-generation scientific descendant of Ehrich, was the first to challenge the prevailing idea. Rose began investigating the notion that the body’s immune system can produce illnesses by attacking its own cells. He went on to articulate the pathogenesis of autoimmunity and how the immune system distinguishes “foreign’” from “self”.

I believe humans are hardwired to tell stories about their experiences; it allows us to feel connected and less alone. I could spend the days grieving my old hearty state of health. Mourning the passing of those times when I would tutor one student after another, drive my son to appointments in Boston, pick up heavy bags of groceries on the way back and then cook a full meal for family and friends. Oh, and walk my dog during a lull. Those were full days, indeed, streaming with activity and enthusiasm.

Sometimes, I am startled at how times have changed, how daily bouts of pain and inflammation in my joints have weathered my existence. I’m ok — I can still walk my dog for a few miles in the woods. But then I have to do the crossword and read quietly for a while, to rest my body, hoping I have not overdone it and willing my joints to not rebel. Maybe later, throw together a simple dish for two.

I began to feel it slowly at first, and then, all at once. Hemingway used a curious turn of phrase to describe how one goes broke — “gradually, and then suddenly.” That is how I got sick — slowly and then all at once. One day everything changed and I had full fledged RA.