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How do you deal with negative comments about CRPS?  

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Roxanne
(@roxanne)
Admin Admin
Joined: 2 years ago
Posts: 40
December 9, 2017 12:21 am  

How do you deal with negative comments about CRPS? 


Wondermum48
(@wondermum48)
Member
Joined: 1 year ago
Posts: 3
September 18, 2018 10:45 pm  

Wow! this is a tough one!  I was diagnosed with CRPS in my right foot/ankle 18 months ago - my spread has been aggressive and has now reached my thigh. 

I made a decision in June 2017 shortly after I was diagnosed that if at all possible I wanted to return to work and decided I would try a portray a positive outlook and not moan/discuss my illness  in front of others as I still wanted to be seen as 'me' and not just a person with a disability.  Treatments for me have not been positive medication wise and this year I have just had a SCS implanted. But back to last year.  I eventually managed to return to work in September and tried my best to be positive - hide the pain as much as possible etc.  Well,  I then noticed that some people at work were being negative towards me and  then I heard the rumours....They were:-

I didn't actually need the surgery that caused my CRPS - therefore I deserved the CRPS....

My condition was not that serious....

My symptoms were not bad - pain levels etc....I was exaggerating them!

To put it bluntly I was devastated - I had worked with the person who had started this negativity for 15 years!!

I had a good cry and then wrote a letter of complaint and made an appointment to see my manager.  I stated that the letter was to go onto this woman's HR file, but that I felt calling her in would achieve very little, but if it continued I would involve the HR dept, unions etc.  I then proposed my plan of action.  I would do a presentation/Q and A session for all staff members.  This would outline what CRPS is, its diagnosis, McGill pain scale etc.  It would also cover the symptoms I have, the treatments tried so far and what other treatments were out there.  In essence I would take away her audience and then if anything negative was said in the future the other staff members would know it was not true.  My manager felt this was a positive way to handle the situation and set the sessions up for me.  She also made the suggestion that I also discussed the reason/diagnosis behind my original surgery and why the consultant thought it had been necessary, thus covering all the points in the rumours!

The sessions were a  success! and in fact had some unexpected outcomes as it made people more aware that I was prepared to talk about my illness and be honest with how CRPS affects me - I covered everything from insomnia, to the weird hypersensitivity to sounds and smells as well as my allodynia etc.  I also told them how asking:-

'are you better yet?' or 'why are you still on crutches?' were not good questions for me - obviously CRPS does not get better like a virus and I would not still be on crutches if I didn't need them!  I instead suggested asking how I was that day, or was I having a good day? A thumbs up or thumbs down signal is also a good light hearted way to ask.  Some people did get upset when I stated how amputation was not normally considered for CRPS but if it was how I would have had my leg amputated without hesitation. It was not my intention to upset anyone so that was hard for me to see, but I reassured people that I am still ME - I just do things slightly differently.  

So now months on - work is fine - I do struggle some days and some days I work less hours but I am trying to stay in work as much as possible.

So I turned around what could have become a really bad situation, and my work colleagues are now supportive and feel more comfortable in discussing/approaching me about  my illness as they now realise  they will not upset me by asking, and that although I am no medical expert, I will answer them as best I can.  

I have had negativity in other areas but none as badly as this.  I have found out who my true friends are...there are quite a few who have vanished - and whom I now never hear from - they did not even hang around to see how I was post diagnosis.  It has been hard...but thankfully I have the true friends who call and understand if I cannot always go out with them like I used to. We just find low key ways to enjoy one another company and go out when I have the energy to do so.  I have also had a mixed response from my family as well - my mother I hardly ever see any more, the excuses to not see me come fast and furious...

So how I deal with negativity?  With as much grace and humour as I can muster - I have realised who I can rely on and I concentrate on those relationships and the positivity they bring me.  If others want to be negative - they do not deserve or warrant my energy.  I will be polite to them and stand up for myself when necessary, but I do not let them get me down. Life is too short, and my energy reserves too low - for me to deal with their negativity.  Having CRPS is bad enough - and if they cannot see the person behind the illness/the crutches and the pain  then that is their problem - not mine. 

Hang in there - it is not easy to handle but concentrate on the people in your corner - they are the ones that matter. 


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