How do you deal with negative comments about CRPS?
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.