“The greatest hazard of all, losing one’s self, can occur very quietly in the world, as if it were nothing at all. No other loss can occur so quietly”
In our interactions with patients we often focus on the medical issue at hand, forgetting the other dimensions of our patients’ lives. Yet these invisible dimensions can have a huge impact on their humanity. I humbly submit that it can be profoundly meaningful, for them and for us, if we paid close attention.
1. JV has rheumatoid arthritis. He is not the most compliant, and I had not seen him in over a year. He was well controlled on Enbrel.
He came to the office one day last week to make an appointment. We gave him one for the next day, but he missed the appointment. When he finally came a week later, I got the real story. He had gotten arrested.
The day he came into my office to ask for an appointment after a prolonged absence, it was because his insurance was denying coverage for his Enbrel. His next stop, after making his appointment, was to the Social Security office to try to sort out his coverage. When asked about whether or not he needed special accommodations, he made a point to mention his hearing loss. However, the person ultimately assigned to help him was not a native English speaker. This made for a very confusing and loud exchange that led to a heated argument with security. It ended with him being led out of the office in handcuffs, and spending the night in jail.
2. Tyler has inflammatory arthritis. He received his diagnosis in Arizona 5 years ago. He was stable on Plaquenil when I met him a year ago, and I only see him every 6 months.
On our third visit, I noticed he had gained weight. He attributed this to the discontinuation of his Dexedrine, in the interest of adjusting his medications for bipolar disorder. I couldn’t remember our second visit very well, but he apologized profusely for having been “lit.” He apparently was so manic that it drove his family crazy. In an effort to get him to take medications for the problem, his sister said: “It’s like living with Vincent van Gogh, except now we have meds for it.”
Now he takes his medications. As a result, his body feels foreign. In the summer, he ran around the backyard all day and night constructing an obstacle course for his dog that he knew he would never get right. Now he is lucky if he gets a few days a week of productive work on his art. He feels dulled; he is not as quick-witted. It is sad, but, he says, this is what society expects of him.
3. Judy is in her mid-70s. That’s not old these days, but she is somewhat crippled by her rheumatoid arthritis. She lived in Manhattan with her husband and enjoyed the city immensely. After her husband passed away, she managed to live in her Manhattan apartment independently for a little bit, but after suffering a fall, she let her children move her to Rhode Island to be closer to them. She has struggled to find her own apartment with amenities that will allow her to remain independent. For the past 3 years she has been in an assisted living facility.
She is so unhappy there. She doesn’t like forced interactions, doesn’t like to gossip, doesn’t like when her neighbors behave like they’re in middle school. It has taken 3 years for the people around her to finally respect her desire to be left alone, to spend her time reading and listening to the opera rather than engaging in idle chitchat that does not interest her at all.
Dr. Chan practices rheumatology in Pawtucket, R.I.