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[Dink]

Hi everyone. I have just been diagnosed with fibromyalgia. And I feel like no one believes me as I look well but I’m being called moody. I try to explain how I am and I get told that im arguing or making excuses not to do anything.. Even though I have little energy and I have constant pain. I decided to help with dinner as I felt guilty. I got asked to do 2 or 3 things and I said that’s too much for me to think about let alone do. Then bombarded with the “I have been at work all day”and so on. I feel like I am talking but no one is listening..
I get it that it’s putting pressure on everyone, but I feel not matter what I do or say is wrong or not enough and feel like It’s being heavily suggested that I’m lazy. I am trying my best. I just don’t no what to do. We are constantly arguing… it’s very frustrating and upsetting. I feel no one believes what I am going through because I look alright and can talk normal so I must be ok…… Please if anyone has any suggestions I’d be grateful. I love my partner so much how I can I help him to understand?

 

[Jemima]

Hi Dink,

I'm so sorry you're in that position - it's incredibly hard when the people we care about don't understand, and the feeling of division that this can create. I think it's very important that you continue to try to communicate what you're dealing with, because all of that stress in the meantime is only going to trigger you - which is the last thing you need!

I was very lucky with my partner - he saw the impact on me and is very supportive. But I did find that some friends just couldn't grasp it to begin with, and even if they did get that I was really ill or in a lot of pain they were always expecting me to get better. I found the best approach was to find a couple of things online that really convey the full spectrum of fibro and show them. That could be an article that covers all the symptoms, or even a handful of memes.

If you Google "If you could see Fibromyalgia, this is what it would look like", a picture comes up that someone created as a visual representation of fibromyalgia pain. It's a pretty shocking picture, but I think sometimes a strong statement is the best tool! There are other things out there that people have come up with too - perhaps you'll find the right way to share what you need to.

You could also try to explain that stress and pressure can actually make the symptoms of fibro worse, and that you need to work together to try to find a balance that helps you. This part of adjusting to fibromyalgia is really hard - we want to push through, but we can't! We have to try to accept our limitations and not beat ourselves up - when we can do that, there's a good chance we'll feel a bit better, so it's worth being ultra kind to yourself

 

[Dink]

Thank you so much Wow it is a shocking picture! This has helped soo much. It has really opened my partners eyes and he has apologised. Hopefully it will help with others too! I can’t believe how ignorant some people can be. But I guess if some people can’t see it, they don’t think it’s there-hence the invisible illness that we have. I really appreciate your time as I felt so alone.

 

[Jemima]

Thank you so much Wow it is a shocking picture! This has helped soo much. It has really opened my partners eyes and he has apologised. Hopefully it will help with others too! I can’t believe how ignorant some people can be. But I guess if some people can’t see it, they don’t think it’s there-hence the invisible illness that we have. I really appreciate your time as I felt so alone.

Aww, it's made me really happy to read that!

I think sometimes people are just not taking in what's in front of them - not necessarily on purpose - and we have to hope that the right push might open their eyes. I honestly believe, despite all the challenge involved, these kinds of struggles can bring people together in positive and unexpected ways. I hope you can both work together to find your way through the fibro obstacle course.

As for feeling alone, I totally understand where you're coming from. Everything about this condition is really tough, but if you can navigate adjusting to it, a lot of things will get easier. You've always got allies on here when you need them! Just shout if you need anything at all

 

[Dink]

Aww thank you so much. Really appreciate that. It’s great to talk to someone that totally understands. Today seems a more positive day. My partner feels so guilty. I told him not to worry and just thanked him for the time he took to look at the photos, memes and the information about fibromyalgia. Hope your having a good weekend, take care x

 

[JayCS]

If you need a whole lot more memes, you could look up a thread called <pics memes that visualize fibromyalgia and other chronic pain illnesses>... . I think memes can get people on an emotional level, as they seem to work altho they cd still claim we are overdramatizing. Next step is learning and remembering to sometimes state and praps describe the pain in a matter of fact way in relation to what we and others expect of us. That's good self-care and helps make transparent for both sides where we're at at the moment. My wife sees a lot of my pain in my eyes (there's a meme on that on that thread too), sometimes I feel she sees more pain than I feel, e.g. when I think I am just moving slowly because I'm so stiff. But I'm learning at the moment that there is some pain there as well. OTOH because she's so sensitive to my pain, problems of others and has her own stress, it's good not to talk too much/long about it or about health matters. Which is often difficult for me, because it's a central part of my life and because when I talk about it I'm working at improving it and not venting or stewing in my own juice. We keep a time limit on it. That's where the forums and my blog help (her...) ;-) Maybe I'll have arrived at a habituated state in a year or so and get bored talking and thinking about it, who knows....

 

[Jemima]

I follow an Instagram account called Chronic Illness Humor. It's all very base, but it doesn't half cheer me up and remind me to see the (darkly) funny side of all of this sometimes! When empathy and comedy are combined, they can become a very powerful resource

 

[Dink]

Thank you for your reply. I definitely agree with thinking positively with this. It’s just that people don’t see how much pain your in every day and they judge you with the “well you look ok”. I find it hard that people are constantly asking if I am ok cause I feel I have to justify it to them and don’t want to keep talking about it. (I don’t like attention)
That’s lovely you have support. My partner is now he understands, of which I thank God for. Thanks again to both you and Jemima for responding

 

[Dink]

Thank you Jemima, that’s sounds something I can relate to as laughter is always the best medicine! Thanks again x

 

[User Requested Deletion 36696]

This is my avatar most places i join up at. Quite apt i feel.

 

[Dink]

Love this, thank you