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Let’s talk about people not seeing Fibromyalgia

Let’s talk about people not seeing Fibromyalgia!

You might be clinging onto your shopping trolley for support one minute, experiencing dizziness and fatigue and no one will notice. Another time, your expression is grim and your in pain, but do they ask how you are today? Many Fibromyalgia symptoms seem invisible to other people. They may affect you greatly but pass by everyone else. This can be very frustrating and upsetting. So, why don’t people see some of the more visible signs of so-called invisible symptoms?

Which Fibromyalgia symptoms? Which Fibro symptoms can seem invisible? Probably, some symptoms are more invisible than others but invisible symptoms could include: anxiety bladder symptoms bowel difficulties cognitive symptoms depression dizziness fatigue pain sexual issues for men and women sight problems

People aren’t mind readers so perhaps we expect too much from them in figuring out what’s going on.

They don’t remember? Maybe you have already explained your symptoms but someone doesn’t ask you about them or remember that you can’t walk for very long, for example, when they are organising an outing. Why is this? Many people are very wrapped up in their own lives and their own worries and don’t have head space for remembering anything more. It’s not that people don’t care, they just don’t get around to thinking about it.

They don’t notice You may feel that your symptoms are really obvious, invisible symptoms can be so bad that they show on your face, especially if you are in pain. Surely if you are holding onto something for support it must be a dizzy day or a fatigue day or both. It can be puzzling that others don’t notice something is wrong, even if they can’t realise the full extent of your difficulties. it may be because people are in their own world and not looking outward enough to see what’s happening to you, but it doesn’t mean they don’t care.

People don’t understand Maybe you’ve told them about your symptoms and they’ve remembered what you said. However, they don’t really understand how these symptoms affect you in everyday life. It may be worth thinking back to when you were first learning about Fibromyalgia, Could you explain the nerve pain? These are quite difficult concepts to get to grips with. For most people, these things will be outside their personal experience and general knowledge so it will be a learning curve for them to understand what you are going through. You might need to explain several times or in different ways so that they appreciate your difficulties. They put two and two together and get five! People can be very quick to jump to conclusions.

Many people with Fibro prefer to cover up how much symptoms are affecting them. Some worry that they shouldn’t make a fuss. Others find that invisible symptoms are easier to hide and this can be helpful if they don't want to disclose thier diagnosis to everyone. you could be doing a better job of hiding your symptoms than you realised?

What could you do? You just simply explain agin that your unable to walk very far or unable to do all the events they have planned but they can do them and you will watch or go back etc.

How can others help? If you are the friend, family or colleague of someone with fibro you could make a difference by: Being supportive. Fibro is a very complex condition where different people experience different symptoms some of which may not be obvious to you. Trying to learn about invisible symptoms so that you understand better. Listening! Accepting that invisible symptoms are very real to the person who is experiencing them. Accept that things may not always be possible to do all the time. Your loved one is poorly and may not be the same person they once was, they are trying to deal with that and your support to help them adjust. Don’t punish someone for being ill. They have been diagnosed with an illness their life isn’t over. Encourage them to do things but don’t pressure Tell them you love them

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