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Hidden illness: one patient's story
  1. Sophie Ainsworth
  1. RAiISE, Clitheroe BB7 4SN, UK
  1. Correspondence to Sophie Ainsworth, RAiISE, Clitheroe BB7 4SN, UK; sophieainsworth99{at}

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I was diagnosed with lupus at the age of 14 following symptoms of joint pain, muscle weakness, fatigue and more. I received a quick diagnosis, but the years since have been bumpy to say the least! After countless medications, flares and hospital stays, I am now 20, have transitioned to adult services, am in my final year of university and run a charity dedicated to supporting young people with ‘invisible illnesses’. Through my own experience and those of other young people, I have found that while living with chronic illness is different for each person, many issues we face are the same. For many, the hidden nature of illness can be the most challenging part. Similarly, being a young person with a chronic illness brings a unique experience, as young people try to navigate all the ordinary challenges of growing up, with added stress, difficulties and responsibilities.

Hidden symptoms

One way in which a condition may be a ‘hidden’ struggle is through the simple fact that many symptoms cannot be observed. While I’ve struggled with inflamed joints and breathing difficulties, often the most debilitating symptom is fatigue. It impacts my ability to work, to focus on my studies and socialise with friends but it is often glossed over. While my other symptoms can be measured in blood tests and scans, fatigue is more difficult to pin down or quantify, but this does not mean it causes me any less difficulty. These struggles can have a big impact on someone’s mental …

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  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.