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Working, studying, volunteering with fibromyalgia
Work could be a real source of strength for some of the people we spoke to. Lyn describes valuing her job as a 'lollipop lady,'...
People with fibromyalgia often lose out financially as they may not be able to work or have to retire early. At the same time, they may also need to pay for help and adaptations at home, and some paid privately for counselling and complementary therapies. The people we spoke to often needed to claim various benefits, including Employment and Support Allowance (formally Incapacity Benefit), Personal Independence Payment (formerly Disability Living Allowance), Universal Credit, and financial help with home aids and mobility/transport. People got help from a range of different people, including Citizens Advice, community psychiatric nurses, patient support groups, and friends.
While benefits might be essential for people to get by, many found the process of claiming lengthy, confusing and stressful. Francis said it was like ‘I’d committed a murder.’
The unpredictability and varying nature of fibromyalgia symptoms made being assessed for benefits especially difficult. People said that on good days they could do things like walking etc, but other days they couldn’t. The felt the questions they were asked by benefit assessors didn’t allow for this and that some assessors didn’t understand the nature of fibromyalgia. Michael says you should be as frank and honest as you can and Lynn Ann says she puts in ‘as much information as I can.’
Martin, Bette and Karen described having to appeal the decisions that were made about their eligibility for benefits and as well as filling forms, some people had to attend an assessment panel.
Although like many others, Emma didn’t find the process of applying for benefits easy, she valued the help and support she got from Citizens Advice.
Work could be a real source of strength for some of the people we spoke to. Lyn describes valuing her job as a 'lollipop lady,'...
The people we spoke to reflected on the emotional impact fibromyalgia has had on their lives. Many talked about being forced to adjust plans for...