Wednesday, 30 October 2019

Fibromyalgia and Social Support

By Sarah Blackshaw

In this hectic world, maintaining friendships can be a tricky thing to do. When you have a chronic physical health condition such as fibromyalgia, it can be even harder. I spend a lot of time working with people who struggle with pain and fatigue, and I’ve written this blog post to explain the things that I think are important when accessing social support with a condition like fibromyalgia.

Communication Is Key

The thing I hear most often when talking to people who are struggling with pain and fatigue is that “other people don’t understand.” That’s likely to be due to a combination of factors. As a society, we don’t do a very good job of explaining conditions like fibromyalgia, as we tend to buy into a model of “have something wrong – go to doctor – get fixed – live happily ever after.” That model rarely works any more these days, and instead we have lots of people struggling with chronic physical and mental health conditions that cause distress. On top of that, if the healthcare system isn’t very good at explaining it, how do we expect people suffering with fibromyalgia to explain it – a lot of people barely understand it themselves! Over time, that can lead to feeling as though nobody around you understands, when in fact it’s more likely that it hasn’t been explained to them very well (maybe because it hasn’t been explained to you very well).

When communicating about fibromyalgia and what you might need in the way of social support, there are a couple of things that are particularly important. One is to explain what might be difficult, and one is to explain what you need. For example, “I’ve got fibromyalgia, so we need to change our plans” is a good start, but it doesn’t tell your friends what needs changing specifically or how to do that. Something more like, “because of my fibromyalgia I’m in a lot of pain, so I can’t really spend three hours walking round the shops today. Could we go for a coffee instead?” is specific, explains the symptom you’re struggling with that day, and gives an alternative option. Most people want to help, and will be happy to change a social plan to allow you to attend.

Plan, Prepare, Pace!

These are three things that should be familiar to people with fibromyalgia. Planning and preparing for social events can make it a little bit easier to manage the pain and fatigue that can come with doing social activities. It might be that you need to ease off on some things for a day or two before, or not plan anything too strenuous in the days after a social event. If you’re an introvert like me, that’s also something that you need to take into account – the “social tiredness” that comes with being around people can make fibromyalgia symptoms worse, so make sure you’re aware of how much being around people can take from you as well as give back to you. Above all else, pacing is really important. Changing plans at the last minute is exciting, spontaneous, fun – and probably not a great idea until you’re relatively confident that you can manage the flare-up that might come with it. I’m not saying that you have to stick rigidly to a plan (you can go to a different restaurant if you want to!) but a cinema trip that becomes a night out clubbing probably isn’t going to do your symptoms any favours, and might make you feel like you can’t do “anything” social when in fact that’s not the case. As the old saying goes: fail to prepare, prepare to fail.

There are lots of things that you might not have considered doing when you didn’t have fibromyalgia, that might be really good to get social connection now. Someone I know likes to invite their friends round and asks them to bring a book that they’re reading – then they make a cup of tea and read together in silence. There’s some conversation, but there’s also a sense of “being together,” which is more important than anything else. Changes like these take some getting used to, but most people are willing to do things differently because they care about you.

Don’t Forget Social Media – but Beware of the Pitfalls

Social media can be an incredible tool when you’re struggling with fibromyalgia and still want to be sociable. There are loads of people out there who are also struggling too, and you can chat to someone halfway around the world to provide and receive support (as Martin and Fran have proven time and again). On Twitter, hashtags like #spoonielife and #chronicillness can connect you with like-minded people who have similar physical health conditions, and we know that however much people like to bemoan social media, it’s great for finding friends.

That comes with a caveat though – beware of social media groups keeping you “stuck.” What I mean by that is that even though it can be great to complain when you’re having a bad day, if that’s all you’re seeing on social media it can start to colour your view of the world. You can start to believe that every single person with fibromyalgia experiences it in the same way, and that nobody with pain or fatigue can ever have a social network outside of a computer. Whilst social media is so useful to meet people who understand how you feel, you should all want the best for each other and want to help each other manage your fibromyalgia for the better – that’s true friendship. If there’s a lot of complaining and nothing positive there, maybe it’s not the best place to be.

Learn When to Let Go

This is linked to my last point, but also to “real-life” situations. Most people are kind, loving people who want to help you because they value your friendship. But not all of them. If you’re holding on to friendships with people who don’t understand why you might need to change your plans, or who try to push you past your pain and fatigue tolerance because they want to do something different, they’re not really your friends. Friendships grow and evolve, that’s the joy of them, and if your friends won’t grow and evolve with you then you might have to think about letting them go. That’s not to say that as soon as they do something that feels wrong you need to cut them out of your life! But if you explain why things need to be different and yet you keep having flare-ups after hanging out with them, or you’re left feeling guilty about not being able to “keep up,” maybe they’re not the right friends for you at this point in time. Try dialling back your interaction with them, or even just sticking to messaging them for a while rather than meeting up – then, if you feel ready to, you can see if they’ve changed their understanding.

Hopefully this blog post has helped you to see that you can have a full and active social life with fibromyalgia – it just might need to look a little different to how it looked before. Thanks very much to Martin and Fran for letting me write this post, please let them or me know if you’ve got any other tips for getting social support when you have fibromyalgia.

About the Author

Sarah Blackshaw is a clinical psychologist working with people who have chronic physical health conditions, particularly chronic pain.

She blogs over at www.clinpsychsarah.com/blog, and can also be found on Twitter @academiablues.

 

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