As in a mirrorBMJ 2002; 324 doi: https://doi.org/10.1136/bmj.324.7343.966 (Published 20 April 2002) Cite this as: BMJ 2002;324:966
Recently, I saw a young woman. She had come in to inform me of her progress, as she knows how long hospital letters take to get through. She knows this because she works in the NHS. A month earlier, she had been diagnosed with lupus erythematosus. She has been given some rudimentary information at the clinic and some prednisolone. She has been told that her blood tests and antibody measurements were not in her notes but that they'd been seen and were “OK.”
As you might expect of an intelligent young graduate working in the health service, she had done some research. She had read about fetal problems in lupus and had asked her consultant which antibodies had been checked, in readiness for the future. She was told it wasn't relevant.
I then began to tell her things about how this was her body and her chronic disease and that if she thought something was relevant to ask, it was. She was the one living with her lupus, not any doctor. She looked fairly blankly at me—understanding, but not thinking she could do it, not really listening.
I then, I'm not sure why, shared my own secret. I told her that I am recovering from optic neuritis and that, according to my consultant neurologist and ophthalmologist, I have a 50:50 chance of going on to develop multiple sclerosis. I told her that, at one appointment at the hospital, I was asked by an associate specialist in ophthalmology if I had had any weakness or loss of balance, as this might be widespread neurological disease. That was it—nothing else, no more information.
She then really opened up. She told me how her perspective had changed. If her younger sister worried about assignments she just wanted to shout at her because it was so unimportant. I told her that when patients came in after having a cold for three days and wondering why they weren't better, I felt like yelling at them. She told me about her fears for a family life later, having babies with congenital heart block. I told her about my fears of a puerperal relapse. I know I was near to tears at one point to find that someone felt just like me and that my feelings were normal.
I realised that I should take my own advice. It is my disease, and if I want anything I have the right to ask for it. I then deserve a reasoned explanation about why it would or wouldn't be beneficial so that I can make my own decisions. (Fortunately, the neurologist I saw did just that.) I am the one whose life is affected. I am the one who has to live with it.
I may tell more patients with chronic disease about my own experience to see if it helps them to tell me about their worries and it lets me help them come to terms with it. I just hope now that my patient feels empowered to talk with her consultant, not just be talked at by her consultant.