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I’m going to tell you a story, a true story. Not one of intrigue or suspense but of an incident that occurred a few months ago whilst I was out shopping and I haven’t mentioned it before now as I’m still somewhat scarred by the incident. 

(I jest, I am over it now, in fact I was once we stopped for a lovely cup of tea, but the point is, none of it should ever have happened) 

I was with Chris and Ben, my youngest son perusing the wares of Selfrigde’s in London, one of my most favourite places to be. When I had a desperate need for the loo (a number 1).  

Let me further explain that during my chemo and radiotherapy and then further during my AP resection operation my bladder was very badly damaged. After I came out of hospital all those years ago I had to have a catheter leg bag for urine as well as my colostomy bag and at one point I had a wound drain bag too, 3 for the price of one if you will. My friend Stephen teasingly said “I thought you collect shoes not bags!”  

He’s wrong of course, I collect shoes and bags equally, much to Chris’s delight.  ;) 

Anyway, thankfully I got very lucky, after some considerable time I was able to retrain my bladder to first drain with regular catheterisation and then gradually move on to going the good old fashioned way.  

But, BUT, at times that means when I have to go I have to go or accidents will occur.  

On this particular shopping trip I noticed my colostomy bag was filling with air and puffing out my clothes, I ignored it for the most part. But then the dreaded no warning wee came along so I dashed to the ladies room. Only to be confronted with a queue of about 30 or 40 women.  

That’s when I noticed the disabled toilets. I had seen some people try the handle and then walk away, as it was locked. But I had my trusty radar key on me thank the lord. So I unlocked the door and settled down to complete the job at hand. I had intended on having a wee and then changing my bag.  

But then I became very aware of the hoo haa happening the other side of the door. The cries of foul play and annoyance.

I was getting a tad nervous, but imagine my distress when the handle to the door started to be pulled down and wiggled about. 

Wee finished I didn’t dare change my bag, I got myself redressed and opened the door.  

The people who I had seen walk away had gone to find a staff member to get the key as it was the baby change as well as the disabled toilet. I was not only confronted by them as I left but I came out to glares and loud grumblings of the other women in the queue. I was literally shaking like a leaf walking out into what felt like a lynch mob. (women in need of the loo can be very aggressive old cows I found to my horror.)

As I came out the staff member was standing there with the key ready to let the mother and baby in.  

In my distressed state I did no more that lift my top up and blurted out “I’m allowed to use it I’ve got a colostomy” 

She was so sweet, she very reassuringly confirmed that it was perfectly ok for me to be in there. And that there was no need for me to explain.  

The absolute liberty of the nosey old mares  waiting in line, they collectively did this sort of knowing, smug face as if to say “yes, ok we’ll allow you with your poor disabled bowels to use this service provided” I could hear the discussion move down the line as they passed it on Chinese whispers style about my affliction. Who knows, by the time that whisper got to the end they may well have been saying “that’s Harry Selfridge’s great great great granddaughter and she has a golden key to all the locked doors in the building!!”

But let’s face it, my business is absolutely 100% no ones business but mine. I should never have felt so vulnerable. And I certainly shouldn’t have felt so shaken. And I really really was. Me!! Tough as old boots me! 

I can’t imagine how someone more sensitive than me would have felt. 

By the time I met up with Chris and Ben I was literally shaking. I was mortified. The thought that someone was going to come bursting in was terrifying.  

There has been a movement (if you’ll pardon the pun) to have signs to disabled toilets better marked. With a far greater description for the use there of.  

I came across one of these signs as I came through Gatwick airport recently. I wasn’t in any great rush and I didn’t need a bag change so I just used the regular toilets. But I found it immensely comforting to know that should I have needed to I could have just used the disabled toilet and walked out head held high no explanation needed. 

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So I’d like to personally thank Gatwick airport for their signage, it really means a lot to people like me, there’s quite a few of us out there. Good work!! 

And to the many other companies, some supermarkets are getting this right too and even a football club or two. Thank you, thank you very much. 

It’s not asking the earth to have clearer more descriptive signs on toilet doors. And should anyone from big companies be reading this, I’ve done some research and you can get the signs needed for just over £6.  

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Just put yourself in the shoes of the disabled toilet user for a moment, and I can imagine you’d have those signs up quicker than I could type this blog. I can assure you it’s a tad scary coming out to the growls and snarls of uneducated, busy bodies. 

And to people in loo queues, please have some compassion for your fellow humans. I’d certainly swap with an unbagged, healthy bladdered soul, so please don’t go thinking it’s all perks to have a disability of any nature. 

“Oh you’re so lucky to be able to use the disabled toilets/car parking spaces etc etc!”..... 

......really?

 

 

 

 

Ps.

If you ever read something you like on here please please feel free to share on social media. If something has helped or reassured you, it could do the same for others too.  

Much love  

Suzanne. x