That's a Fail!
It starts a few moments after I wake up in the morning. When I move to sit up, my body screeches at me, freezing me in the spot as pain flashes through one--or several--joints. I lay back carefully, sighing and racking up my first failure of the day: getting out of bed.
Once I’ve managed to grit my teeth, sit up, and swing my legs out of bed, I stand up. Gingerly. If my feet moan and throb when I put my weight on them, as if I’ve spent the night standing behind a fast-food counter, I know I’m facing an ongoing, continuous series of all-day-long failures. Getting through my day with that kind of pain really puts a dark pall on things, so bad news like that can send me right back to bed (to gather my courage, of course.)
The next challenge is walking. After a long night in bed, joints all over my body are stiffer than the Tin Man after a downpour. I’m always surprised (even after nearly 28 years!) at how many joints move while walking. There’s my hips, of course, and my knees, and the many small joints in my ankles, and the many more in my feet and toes. But let’s not forget that almost all the other joints start moving with that first step, too. Shoulders swing, the neck bends and turns, elbows bend, fingers tense and clench. Everything is stiff! The failure here? Being unable to walk to the bathroom smoothly and easily, like most people. I can’t do it without lurching and growling like Dr. Frankenstein’s monster.
It hurts to break through stiffness like that. Pain makes me slow and clumsy; I can’t hurry. Which means that unless I’ve gotten up early enough to give myself extra time, I’m probably going to be late for work, that appointment, or for a visit with a friend.
Fail. Fail. Fail.
All of this happens within the first two hours of the day. I haven’t even mentioned the fact that one joint (or two, or three) may also be under attack. “Flaring” is the gentle word. The pain is hard to ignore and depending on the level of intensity and the joint(s) involved, I may or may not be able to carry on with my responsibilities and plans for the day. If I can’t, well, that’s another failure I have to face up to. It means a series of apologetic, groveling, humiliating phone calls or emails, explaining why I’m canceling my appointments or failing to show up for work. If I can get on with things--slowly, and with ugly pain coloring each passing moment--I’ll probably fail to enjoy the day. It will be one long, agonizing chore.
That’s a lot of failure for one small woman to deal with day in and day out. I do my best, though, and I work hard to stay cheerful and hopeful. I figure moping about it will only make me feel worse (another failure, this one of the spirits), so I put effort into turning off my mope-mode.
So you can imagine how I feel when my rheumatologist tells me I’ve failed a drug.
I’ve failed it? How can that be? I took the drug in good faith. I made sure I complied with all the rules involved: I took the exact amount prescribed, the exact number of times each day; and for the time required. I took that drug religiously, with real confidence and with Pollyanna-like hope in my heart.
And yet, when it didn’t work, and my RD stayed just as bad as it was before--or maybe even got worse--I’m the one who failed?
I’m probably being nit-picky or too sensitive, here, but as a writer, I believe words have real power. Stating that “the patient failed the drug” is perfectly normal in the medical world. Doctors say it. Researchers and scientists say it and write it. It’s bothered me for a long time, so I decided to contact a few doctors I’ve gotten to know through Twitter. I sent each of them this message: “I'm researching an article. Question: Why do doctors say that we "fail" our meds when the meds don't work for us? Thanks!”
“Excellent point. The drugs fail you,” stated Dr. Lynn Webster, the VP of Scientific Affairs at PRA Health Sciences and the Immediate Past President of the American Association of Pain Medicine. “You don't fail. It is an effort to transfer responsibility to people in pain. Sad!”
Thanks, Dr. Webster! You’re a man after my own heart. But I don’t really think that the term is a conscious effort to transfer responsibility for the drug’s failure to the patient. That sounds too calculated and Snidely Whiplash to me. But it would be great if they could somehow become more aware and change the practice.
Dr. Irwin Lim, a rheumatologist and the director of BJC Health in Sidney, Australia stated “I don't know. I suppose I use the word ‘fail’ as well, meaning ‘didn't work well enough or as expected.’”
Now, I know for a fact that Dr. Lim is an empathetic and extraordinarily caring physician, and I’m sure he’d never use the word “fail” in regard to his patients in this context unless he just didn’t notice the negative connotation. I think that’s probably how most doctors and researchers use it.
“Sounds more like ‘US English,’” stated Dr. David O’Reilly, a rheumatologist in Suffolk, England. “‘Failed to respond,’ a UK Dr might say. Does sound negative. Is "Drug X ineffective" preferable?”
Yes! I’ve seen the term used in studies done by medical research teams from all over the world, but saying the drug we were prescribed, and that didn’t do the job, was ineffective would be much, much better. It would put the onus of responsibility on the drug, rather than on the patient. After all, we have no control over our rheumatoid disease and how it or our bodies react to the medications we take. But they’re made to do very specific things to alter the course of the disease once they’re in our bodies. When those things don’t occur as advertised, it’s the drug’s failure, not the patient’s.
We already have plenty of things we fail at because of RD, regardless of our efforts to do otherwise. They’re not isolated failures, either. They’re chronic, just like the disease we’re battling. We just don’t need one more “failure” to add to our running list.
Right now, what RA tips would most be helpful for you?