This is ungrateful, and I know it, but I really don t know how to manage colleagues' reactions since my diagnosis became more publicly known at work. I feel like I'm no longer an equal, I am somebody in need of kindness and sympathy (and occasionally pity), who also needs talking to slowly and loudly ( I didn't know it had affected my hearing!). I've been hugged and cried on more times than I can count and last week somebody actually tried to put my seatbelt on for me, there was no warning given or obvious need. My fixed grin is slipping and I am tempted to hide under the duvet and avoid it all - I have no idea how to behave. I know I am lucky to work with nice people, but I feel like I'm disappearing under the Parkinson's label that seems to be stuck firmly above my head . . . with neon lights! I also know that my almost obsessively private nature has made the situation worse, but how do you suddenly become a different person? I really do know that this sounds bad, which is why I'm not asking friends for advice ( total cop out), but I was just wondering if anybody has any ideas on how to move forward without causing offence? Thank you. J
hi i think just show them youre still capable... and thank them for their kindness but say its ok i can manage !!
make a joke of it . my colleagues 9 mths down line are slipping into normality again and then seem surprised when i have bad day ..... 'whats happened you were ok yesterday ' so i dont think theirs an easy answer .
i have a good banter going on with some colleagues (also friends out of work) about where ive parked the rollar skates and scooter. (i dont have one )have 1 bad leg when walk on bad day have limp so they offer to put skate on and push!
my problem is when walking to car after long shift , really struggling to walk and strangers stopping and asking if im ok .... know they mean well but want to curl up and hide out of embarrassment
Hi Jackson and welcome....I have just spent the last half hour replying to you but once again the post disappeared into who knows where???? so i will try again but this time a condensed version!!
Like you i have experienced being treated differently once my diagnosis became public so to speak. I used to attend a weekly dance class and although one or two people there had an idea that i could have Parky, once the rest found out i was followed to the loo by one lady as i had taken a little longer than usual!!! that had not happened before. Also my Husband was often being asked in whispered tones "How is she today" .....well i can tell you i am not deaf!! Another woman has a Brother with PD and suddenly i was being invited to her house to meet her Brother so we could have a little chat about "OUR" illness!!! WHY??? Would i have been invited round to chat about our arthritis or corns??? I doubt it. It became so intolerable that we left the club altogether, i was sick to the back teeth of being treated differently. We have many other friends who have their own ailments (who doesn't)? but they are people with feelings ...like you and i, and get on with their lives, enjoy themselves, and do not lump us under any heading that needs sympathy. We are the same people folks, not deaf, stupid, and if you don't like to be offended then treat me as you always did before you knew about this Parky business.
Years ago i was hit by a taxi abroad and sustained 3 fractures to my Pelvis and consequently spent some time in a wheelchair........yep you guessed it.....whoever was pushing me would always be asked "how is she today"???? like i said i am not deaf, daft or abnormal......so do not treat me as though i am.
I would just tell them that you might stick a label around your neck saying before you ask " yes i am great today thanks" that should sort it ......what do you reckon????
Keeeeeeeeeeeeep smiling Jackson
Best wishes to you
luv Dolly x
Thank you both for your replies, I tend to over think things and get all bogged down (especially at stupid o'clock in the morning) and it really helps to hear others' experiences. I guess I need to develop a thicker skin and work on having a few stock replies, a better sense of humour (never a strength) and talk about it more openly - which might allow people to come and just talk to me ( the hugs / crying have mercifully stopped, it's now a case of 'there she is, we were just wondering where you were' said loudly when I enter a room). I know people mean well and I was feeling fairly crap about my desire to turn up to work drunk, dance on tables and swear - it might have stopped the pity but it wouldn't have ended well . And I also really do feel less guilty about my reactions / feelings having read your replies - I over think things to the point of total confusion at times.
I know the disappearing post experience, so frustrating. I now type all mine out on a word document, or note if I'm using an i-pad, then save, copy and paste them onto the forum. If they get eaten, I just copy and paste again, which strangely feels like a small victory. I can't pretend it was my idea, and it can be long winded, but it works ok.
Thanks again, take care, J x