Our Patient and Public Involvement and Engagement member, Kausar, spoke to the Alleviate research team about her experience of living with back pain while caring for her 2 brothers. Watch the latest episode in our ‘Pain Awareness Month’ series.
Kausar is part of Alleviate’s Patient and Public Involvement and Engagement (PPIE) team and in this episode, she describes how she manages living with back pain while caring for her two brothers, who have learning disabilities. Kausar struggles with sleep, needing an hour or more to unwind at night before bed and sometimes needs to crawl downstairs in the morning.
Kausar further shares that her faith is a source of strength when she is in pain – even though it can be hard for her to kneel on a mat for her daily prayers. Kausar volunteers for a number of groups, helping to take her mind off her pain.
Kausar explains how she has acted as a carer for her brothers since she was just 8 years old and talks about the challenges of balancing their needs with her own. Since her brothers are non-verbal, Kausar has to be very patient with them – even when her own pain is at its worst.
Kausar hopes that Alleviate will help others understand the pain she faces on a daily basis, while also helping her to manage her pain more effectively. She hopes Alleviate will also lead to a better understanding of the pain her brothers face.
The Alleviate Pain Data Hub is a £2M collaborative project funded by a consortium of funders including Versus Arthritis and the UK Medical Research Council. The project is led by the University of Dundee and involves partners from across the UK. Alleviate is one of nine HDR UK Health Data Research Hubs.