Practice

The patient's journey: systemic lupus erythematosus

BMJ 2006; 332 doi: https://doi.org/10.1136/bmj.332.7554.1374 (Published 08 June 2006) Cite this as: BMJ 2006;332:1374
  1. Jane Robinson (cambslupus@ntlworld.com), patient
  1. 38 Percival Street, Peterborough, Cambridgeshire PE3 6AU
  • Accepted 25 April 2006

Dancing with the wolf

It is fitting that the Latin word for wolf should be “lupus,” because the wolf in my life is systemic lupus erythematosus (SLE). My symptoms include rashes, ulcers, fatigue, anaemia, depression, photosensitivity, hair loss, joint and muscle pain, flu-like signs, kidney problems, headaches and migraines, and weight gain and loss. The condition carries increased risks of miscarriage and heart disease. No two people with lupus are alike; their journeys may differ greatly.

I am 37, I was diagnosed with lupus 12 years ago, and I have no idea how my lupus will continue to affect me or what complications I might have.

Watching from the sidelines

From the age of 10, I went to my general practitioner with various symptoms—rashes, joint pain, and mouth ulcers. They were put down to my age, too much sport, not enough sport, and even not being able to sweat properly. The symptoms never presented together nor were they put together to form a potential diagnosis of lupus. I often needed to sleep when I got home from school before I did my homework. It was put down to being a typical teenager and rather lazy. When I was 19 I had trouble climbing the stairs at work. My doctor told me that I would probably go on to have arthritis but was not prepared to take it further and confirm a diagnosis.

Aged 25 I woke up one Sunday morning covered in a rash. On Monday, the doctor suggested that it might be an allergic reaction and said it wasn't contagious. I went to work. By the end of the day I was unable to move. All the joints in my legs and arms had swollen. I managed to get home and went back to the doctor the next morning. I was given a stronger antihistamine and told …

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