Amy Colby, now 26, recounts a 15-year ordeal of painful skin conditions, starting at age 11, during which she was repeatedly misdiagnosed by doctors who blamed her weight and hygiene. The persistent and agonizing lesions on her groin, which later spread to her armpits, breasts, and buttocks, led to severe emotional distress, including depression, anxiety, and suicidal thoughts. Colby was eventually diagnosed with hidradenitis suppurativa (HS), a chronic inflammatory skin condition that is not caused by poor hygiene and is not contagious.
Colby's symptoms included painful lumps and boils that could develop into abscesses, scarring, and tunnels in the tissue, often with an unpleasant odor. The condition significantly impacted her daily life, causing pain, difficulty moving, sleep disturbances, fatigue, and the constant need for wound dressing changes. The unpredictable nature of her flare-ups also made sustained employment challenging.
"I was made to feel dirty," Colby stated, describing the humiliation of being dismissed by medical professionals and the subsequent shame that caused her to hide her condition from peers and potential partners. The physical pain was compounded by a devastating psychological toll, leading to a complex PTSD diagnosis after repeated hospital admissions in 2023.
The breakthrough in her diagnosis came in 2016 when, as an adult working in London, she stumbled upon a Daily Mail article detailing symptoms similar to her own. This led her to connect with the woman featured in the article, who encouraged her to seek a dermatologist referral. The diagnosis of HS brought a profound sense of relief, confirming it was a medical condition and not a personal failing.
Following her diagnosis, Colby began sharing her story online, discovering that thousands of others had experienced similar struggles with misdiagnosis and stigma. "It's sad that other people have gone through it, but at least I feel like I'm not alone," she said. She learned that approximately 700,000 people in the UK have HS, yet there is no single diagnostic test. Diagnosis relies on recognizing a pattern of symptoms and monitoring the skin.
Colby is now dedicated to raising awareness of HS, noting the risks of serious secondary infections if the condition is not treated correctly. She shares her experiences through presentations to nurses, aiming to educate healthcare professionals who may not be familiar with the condition. "I hadn't realised how important my voice is as a patient," she remarked.
Her current mission involves bringing HS awareness to secondary schools, as the condition often begins around puberty. She hopes to prevent young individuals from enduring years of pain, confusion, and shame, similar to her own experience. "The more awareness out there, the sooner people will be diagnosed and hopefully be able to live a more fulfilling life," Colby stated. She encourages anyone experiencing similar symptoms to speak with their GP.
