Linda's story

Linda wrote this piece in 1999 to accompany Millie Brierley's exhibition 'Care at the Leading Edge'. She sums up what her illness was like before taking Campath-1H. Her account is personal and not necessarily reflective of the experiences of other patients who took the drug.

This shows Linda taken of her at home some time after she discharged from hospital where she had received Campath-1H. Credit: Millie Brierley, Exhibition: 'Care at the Leading Edge', 1999.

My steroids are affectionately called 'toad pills' (that's what I began to feel and look like) .....The ability to laugh at oneself and a sense of humour are essential to survive .... Loss of independence and also loss of identity - I don't look or feel or even act like Linda ....Not being in control of what's happening in my body is very scary sometimes, especially in the middle of the night .....Lack of diagnosis for two years, despite numerous tests and hospital visits — it was very frustrating ....I would rather know what I have to face in the future and try to adjust my life - face the worst and hope for the best ..... putting on a front ..... isolation caused by other people's perception of me .... Because you don't look ill, i.e. weight gain due to steroids, people expect you to feel well ..... quality of life rather than quantity ..... living not just existing.