I have been researching FND online-and still I have no clue about it.  I joined several FND groups on Facebook.  I followed a few peoples comments and stories to try and see if their stories resonated with mine.  I don’t know if I joined the WRONG FND groups but these groups were not what I have been used to.  In The Wahl’s groups everyone was so positive- despite being wheelchair bound or in pain.  They were taking action and they were POSITIVE- you almost got a buzz off these people, they inspired you to get up and do something- To fight on!! To Keep Fighting.  The FND groups I joined were the OPPOSITE of this.  I don’t know if it is because FND is so… ambiguous – maybe these people in the FND group are struggling mentally because they aren’t being told definitely what is wrong- but every single person who posted- over 3 groups that I joined- were struggling- really struggling to be positive.  They felt they weren’t being taken seriously- by family and friends and even professionals- one guy was at a pip meeting and was told he was ‘talking nonsense’ there was nothing wrong with him… Imagine if you have all these symptoms- some wheelchair bound- and your family and friends don’t believe there is anything wrong with you and even professionals say you are lying- well that is going to have a serious effect on your mental health- and you won’t get better.   The invisible illness made even more invisible by its ambiguity.   If you are diagnosed with an auto-immune disease- you know the problem, your family knows the problem, your Dr knows the problem and you are taken seriously.  Okay so it is still mostly an invisible illness and strangers will probably judge you when they shouldn’t but you have the support you need most.  The other difference I noticed- and this is controversial- the people in the FND groups seemed to have given up hope.  They weren’t taking action.  They weren’t exercising or watching their diet.  Many of them seemed to smoked- every photo they were smoking, many of them were overweight, they drank sugary drinks like cocoa cola.  I am not judging- I know my diet is not good all the time and  I would like to make it clear that this was just the FND groups I JOINED.  This is not about everyone with FND.   When I thought I might have MS I changed my diet.  Food is medicine- I never smoked in my life, but I imagine it is not very good for you- I also know how important exercise is- although I struggle to keep motivated.  I know this is probably a catch-22 thing- they aren’t being taken seriously so they give up- and they give up so they aren’t being taken seriously.  I know some days are HARD- and I KNOW I AM LUCKY in that my symptoms have not left me in a wheelchair or blind.  The people in The Wahl’s group are in wheelchairs, and blind and I wrote about a lovely lady who died- right up until the end she was positive and she was fighting.  She messaged the group on her way to hospital- scared but fighting.  The people I came across in the FND groups- had given up-  they were not fighting- so I left the groups- I couldn’t take on their anger and complaints as well as my own anxiety.  Just now though- I have had a thought- I should’ve stayed- and been positive for them!! Maybe I should rejoin and bombard them with sunshine or would I just come across as patronising?  Or would their negativity suck me in- I am already fighting my own anxiety- maybe I can’t fix everyone.  I dunno- I just came away from the FND groups with less hope than when I thought I might have MS.


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