Messages for health professionals from people with fibromyalgia

We asked people if they had any advice to health professionals who care for those who have fibromyalgia. A common theme was ways of showing care and understanding, the importance of listening and making people feel believed.

The key messages for health professionals were:

  • Treat fibromyalgia as real and let people know you believe them and the symptoms they experience.
  • Listen and engage with the person in front of you/ let them know they are being heard. Martin says you can sense or feel if a health professional is interested.

Chris talks about the importance of listening and how health professionals should try to engage with the person in front of them.

Age at interview 58

Age at diagnosis 43

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Catherine also says that it’s important for health professionals to listen. She praises her GP for being able to ask the right questions to find out what might be wrong.

Age at interview 67

Age at diagnosis 64

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  • Try to demonstrate understanding. Be patient and try to empathise.
  • Lynn Ann says it’s important for health professionals to try to understand just how ‘debilitating’ fibromyalgia can be.
  • Be considerate of people’s feelings and how their wider life is being affected. Treat them as a whole person and ‘not just a name on a piece of paper.’ (Alexis)

Alexis says that it’s important to treat someone with fibromyalgia as a human being and not just a name on a piece of paper.

Age at interview 24

Age at diagnosis 23

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  • Recognise that what you say can have a big impact in terms of how it makes people feel.
  • Signpost people to more information about fibromyalgia e.g. direct them to websites and support groups that they may find helpful.
  • Find out as much as you can about fibromyalgia, Fibromyalgia is complex and people may need support from a range of different healthcare professionals working together to improve care and support.

Some people suggested health professionals could learn more about fibromyalgia, so that they can understand what someone with fibromyalgia goes through. But at the same time people recognised GPs have limited time and that it can be hard for them to keep up to date across so many conditions. Aleysha said, ‘It’s okay to say that you don’t know’ and direct people to other sources of information.

Aleysha wishes GPs understood more but recognises that they can’t work miracles and people need to do their own research too.

Age at interview 23

Age at diagnosis 22

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