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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Listen. Just listen and engage with the person. And let them know that they are heard, and let them know that you have listened, and let them know that you will work with them, and it’s not a case ofyou know, your head’s down on a piece of paper or your head’s in the computer, you know, make that personal contact with them and you know, and listen.

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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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What would be your advice for healthcare professionals?

Oh, wow. That’s a big one, that’s a big one. Listen to the patient, just listen to what the patient is telling you, because sometimes they’re not really telling you what they need to be telling you. You know, I go to my doctor and he says, How are you today I say, Oh, I’m fine and I think, then I think to myself, Well, why am I sitting here if I’m fine you know? But then he’ll ask the right question, he’s okay, he’s good. Yeah, just, just get the patient to talk, don’t just make a judgement before you hear what the patient is saying.

You just said your GP was asking the right question, what is the right question he’s asking?

What he does is, which is very, very clever and it’s very, very cringing sometimes, he’ll go back and he’ll work his way through your last few consultations, and then he’ll say, So what has changed and that’s clever, that’s clever to go back through. My currentthe two GPs that I would see, they’re the only GPs that I’ve ever experienced that have done that. They’ve gone back and worked forward to the present. I think that’s quite important because sometimes you forget about why you’ve been to the doctor before, and you think you’re going with something new, where in fact it might be something you’ve already seen them about. They’ll think, Well, six months ago you came with that, and now here you are coming with it again today, maybe we need to look at this do you know what I mean? And I think that’s quite useful.

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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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I think the biggest thing is that we’re not just a name on a piece of paper or you know, a time of appointment, we are a human being the same as you are. And you know, if, if the roles were reversed, if this was you coming in as a patient, or if it was you know, one of your children or your parents or you know, somebody that you really love, what would you want to hear from a doctor?

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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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So it’s difficult, like I already know how like rigorous the kind of studying is, but I think it’s also partially on like us as the population, as patients to have an understanding of like people who work in healthcare aren’t like miracle workers. They are people and sometimes they make mistakes, and also they only know so much, and like putting less pressure on them, like you have your own responsibility to kind of do things to look after your health and you can’t just rely on the healthcare system, like you can’t just go to the doctor because you have a cold. But then also to listen to doctors when they tell you not to take antibiotics for things like colds because they’re viruses and antibiotic resistance is going to end the world [laughs].

Anyway, but no, I think that, I think there needs to be a lot more understanding of the situation, like, the reciprocal kind of, conversation, interaction that they have that doctors have to recognise that patients are people and that what they say will have a big impact, and the patients have to recognise that doctors and other healthcare professionals are also people and they can make mistakes and they don’t necessarily know the answer.

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