"But you don't look sick to me!" - share your experiences

I was going to post this in my normal chemo thread but I decided to make it a thread of its own because other people might have the same experiences.

I have been a little bit apprehensive about asking for accommodations during chemo and a couple of times I have had trouble getting my point across subtly. For example, at work, there were a couple of times when I had to politely insist that they security guards hold the doors open as they are too heavy to manage. They are supposed to hold them open for anyone that needs it. The trouble was making them realise that I too, need assistance.

The situation did get resolved with the security manager but every so often there’ll be a new doorman and it’ll begin from scratch :-

Another occasion the Tax truck hit so bad, I needed a wheelchair for a hospital appointment. When I hobbled to reception to ask, the receptionist said “it’ll be a 20 minute wait…can you not walk there?” when I told them I couldn’t and that I had cancer, a wheelchair materialised within seconds.

There was the Gamesmaker in Stratford who blocked my path out of the shopping centre because I dared to use the lane for people with reduced mobility or pushchairs. I wouldn’t have been so bad if she’d actually said something but she just stood there with half her face covered with a hoodie trying to stare me into moving. And her too, when I mention the C word her colleague nodded for her to move aside. WTF!!

On Tuesday I needed another appointment at the aforementioned clinic. (I had been feeling much better energy-wise but then I ruined it with a 1.5 mile walk around the park) so when appointment time rolled around I was in pain again. So I ask for a wheelchair and the receptionist (another person this time) points then out and say “help yourself”. No, says I, I need a porter to take me up to the clinic. “You mean it’s for YOU?”. Um yes. He doesn’t question any further but he does stare as the porter wheels me away. He stares again later when the clinic receptionist brought me back herself. My mother was parked right at the doorway so I wouldn’t have to walk too far.

Now, I’ve had enough. – this has been happening too often.

Yesterday, I was in Waterloo station, and needed the facilities. I can walk but my back’s in agony after dealing commuting on public transport (I normally drive). as I’m waiting for the accessible toilet, and I’m first in line. Some attendant/cleaner decides to shout from several feet away “that one’s for DISABLED PEOPLE!!! The other one is DOWNSTAIRS”

This person had singled me out from everyone else queuing. Unfortunately I did flare up and yell that I needed the accessible one. She changed tack and said she didn’t know and she was trying to save me waiting. This was rubbish, as I was at the front of the line. I told her she’d had no right to single me out, and that you cant always see why people need the accessible toilets. She even tried to suggest that perhaps I didn’t have the money for the other toilets - gaaahhh!

Well, the manager at the station reception got a full verbal account. I have also put in a written complain to Network Rail. I was absolutely furious.

It’s so frustrating when you’re trying to lead some semblance of a normal life despite the side-effects. It feels like a knock-back when people question you for trying to use the assistance/facilities that are available. It does make me feel embarrassed, though I try not to show it, when I have to explain. and then my mind tries to tell me that maybe I was being a wimp, maybe the pain wasn’t *that* bad :frowning:

Why don’t people get that apparently young, apparently fit people need assistance too?!

Big Hugs Gadget Gal - you are such a brave bunny to try and keep your life as normal as possible. Looking forward to meeting such an outstanding woman!!!

Hugs & kisses


Well said G-g, I sometimes feel like I have disapointed people when they say that I look well but I feel really sh-t and I do struggle a lot with heavy doors and supermarket trolleys, I got some very dirty looks from two old dears last week as I had to sit on the only chair in my local pharmacy as I am not able to stand for long periods and to top it off I was having a major flush with my face positively gushing with water!!!

My stock answer was ‘Yes - it’s amazing what a bit of makeup can do!’

Great article in October copy of Good Housekeeping by a lady who had BC 3 years ago and instead of making light of her thoughts she says it from the heart and I agree with so much that she said. Interesting reading if you get the chance. Val