As you know, I help out at my mums barber shop and to be honest I’m getting abit fed up of people not knowing what CF is and as a result me avoiding telling them I have CF. I don't want to talk about CF all the time, people can't comprehend how it affects me and it also creates an awkwardness for the them.
Conversations tend to go like this
Customer: are you still studying?
Me: no I finished Uni about 3 years ago
Customer: oh right, you looking for a job to do with your degree then?
Me: no not really
Customer: oh right, how come?
Me: I have cystic fibrosis so had to give up working at the college I worked at after uni
Customer: whats that then?
Me: [wants to scream}
Or
Customer: you must be new here never seen you before?
Me: no I’ve been here ages, my mum owns the shop. I don’t work many hours
Customer: oh how come, got another job or a kid?
Me: no I have cystic fibrosis so it limits how much I am capable of working
Customer: whats that then?
Or
Customer: What days do you get off then?
Me: I’m only here Saturdays
Customer: oh right, got another job or a kid then?
Me: erm neither, I have cystic fibrosis so struggle to work a lot of hours
Customer: whats that?
Or
Customer: you going out tonight then?
Me: no I’m not feeling very well, how about you?
Customer: nah, whats up with you? Hope its not serious?!
Me: well I have cystic fibrosis and I'm not too well at the moment
Customer: [looks all awkward and goes quiet]
Or
Customer: you got a cold or hay fever?
Me: erm neither thanks
Customer: whats with the cough then?
Me: I have cystic fibrosis
Customer: whats that? Is it serious?
OK you get the jist! I don’t want to spend all my time explaining what CF is so end up just trying not to talk to people! Plus it makes them feel awkward and embarrassed! I mean how can you explain CF in terms that people understand without making them feel uncomfortable! You can’t believe how nosey people are! The thing is, I barely know these people, I don't want to have to explain my life to them and I don't want the awkwardness which emerges once I tell them I have a disease, plus I get asked stupid questions like 'isn't there a cure?'. CF is not who I am but somehow it seems to leak into everything I do and talk about! It seems to be becoming part of my identity more and more. It's in my mind all the time, whether it's planning when I need to do my next nebuliser or trying to figure out how to explain a part of it to someone. I suppose I could lie but that's not how I think I should live my life.
I once did a customers hair and I knew his daughter, he said 'oh which Gemma are you? The one with CF?', is that who I am? Is that how people remember and describe me?
I am not ashamed I have CF, however it's a difficult disease to explain in simple terms and it would be nice to get away from it, I know it's impossible but one can hope....!
Thursday, 16 September 2010
Subscribe to:
Post Comments (Atom)
2 comments:
I know what you mean Gemma. You shouldn't even have to justify the hours you work, even if you didn't have CF, it's up to you how many hours you do!
PS - was in Wilko in town today and thought of you. There was a book called 'Cooking for your Dog' and it had a little chiuawa on the front (know I've spelt that wrong). Really wanted to get it for you but don't have any money :-( xx
I so know what you mean Gemma! Funnily enough until I found my lovely hairdresser (who I've now been going to for a couple of years) I HATED having my haircut because the hairdresser always said "got a day off then?" and when I said "err...no" they then said "you got kids then"....er no....etc etc. And I just had to launch into the whole thing about CF!! To which one replied "God its alright for you lot being able to not work and get loads of benefits isn't it?" ARRRGHHH!!! I also get it everytime I meet someone knew as everyone automatically says "so where do you work?" Its not quite so bad at the moment as I can say "no I've recently had a little boy" but other Mums I meet always tend to say "so when are you going back to work?" When I was at LLTGL it was easier as I just said "I help run a charity" but now I just have to explain things....which is annoying but what else can you do?! Anyway, the point is, I share your frustrations!!! xxx
Post a Comment