Rameesah's experience of chronic pain скачать в хорошем качестве

Rameesah's experience of chronic pain

Part of the pain management video series commissioned by Leeds Community Healthcare. These videos are to help look at how the Pain Management team and other services can improve people's experiences of managing their chronic pain. Rameesah is a young woman from Chapeltown, in Leeds. She lives with multiple chronic conditions: juvenile lupus (undifferentiated connective tissue disease), endometriosis and hypermobility disorder. Her pain levels fluctuate drastically. On some days, she can function; on others, she cannot get out of bed. To manage her pain, Rameesah uses a mix of NHS treatments and self-care strategies, such as hot water bottles, rest, and gentle outdoor activities. She has tried acupuncture, hydrotherapy, and sleep therapy through the NHS, but access is often limited. Steroid injections provide temporary relief, but their long-term side effects have made frequent use unsustainable. Living with chronic pain also affects Rameesah emotionally. While getting a diagnosis brought some clarity, she often feels anxious, isolated, and guilty for not being able to meet others’ expectations. She has sometimes avoided seeking help because of previous experiences of not being believed or taken seriously, describing how exhausting it can be to explain her pain only to feel dismissed. Despite these challenges, Rameesah values the care she has received from specific healthcare professionals, particularly nurses on the rheumatology helpline and a supportive general practitioner. What made the difference for her was being listened to without being rushed, and having someone who helped coordinate care across departments. Her GP has also been open to exploring new approaches and research, making her feel seen and supported. Rameesah believes that care for people with chronic pain needs to be more consistent and equitable. She wants professionals to take more time to listen properly, use the patient’s words to reflect their understanding, and ask thoughtful questions. She also highlights the need for long-term access to therapies such as hydrotherapy and acupuncture, which support physical and mental well-being, but are often unaffordable without NHS funding.