As someone who has had lupus for over fifty years, reflecting on my life, I see that I have had cognitive problems from childhood, with a mismatch between intellect and processing ability. I suspect that for a lot of people with lupus, there is a feedback between what goes on in the brain, their physical condition and societal expectations. Certain jobs for people who are effectively brain damaged, will be exceedingly stressful, as will relationships with people especially in busy social situations. Stress is a major factor in exacerbating symptoms, so treatment programmes for lupus, as well as being medical need to focus on life balance and a healthy pace of life for individuals with the condition. Occupational therapy and sensitive workplaces, may be as important for treatment as medicine.

How is it possible to educate patients, doctors, other health professionals, friends and families?

Dear Mr. Mochrie,

Thank you for the question. Your self-observations on SLE are universally verifiable. There is no satisfying answer for now, even though the answer should have been central to achieve optimal therapy, given our century-old, bio-psycho-social definition of health. Answering you, will be a most important part of the « personalized medicine » approach currently being proposed everywhere. Unfortunately, «workplace environmentalomics» are largely neglected. The field is not even at the stage of systematic data collection, let alone at the « modifying-for-best-care-practice » stage. For me, you are pinpointing a vast and complex area of unfulfilled needs, requiring immediate research attention!

Hope for action. Best!