Crohn’s Disease- humiliated by receptionist at doctors

[KnittingMania]

I’m at doc surgery rn waiting for my appt. I have Crohn’s Disease and have to access toilet unexpectedly up to 12 times a day or more. So Sod’s Law it happened while waiting here. Immediately after I exited the toilet, having tried my best to mitigate odours by cleaning etc, the receptionist bustled out and went straight into toilet, huffed loudly, went elsewhere with lots of door banging and came back with air freshener. She then sprayed it not just in toilet but throughout the reception kind of passageway that is in clear view of the waiting area.

I cannot help being ill. I avoid so many things bc of this miserable and embarrassing illness. I thought I could feel safe at doc’s. They could provide air freshener in the toilet. But my point is wider- no one should be shamed by their illness in a doc surgery.

I would like to complain. Should I? It’s kind of embarrassing doing this. But I feel she should learn and raise her levels of understanding.

Who is getting shit on their hands whilst wiping their bum?

If you follow the thread thats what that poster was asked

Also children sometimes, people with tremors in their hands or other hand co ordination issues, people with physical limitations

It shouldn't fucking matter. Someone working in a medical setting should have the awareness and sensitivity to realise people may have bowel issues.

she’s a right meanie

In Feb 2008 i was taken to hospital by ambulance and told i had a kidney infection. I was in incredible pain and had diarheoa like lava. I had collapsed and lost conciousness in my kitchen. Later in hospital i was given a private room. A nurse came in screwed her nose up and moaned about the smell.

Later the hospital registrar came and asked me if id been abroad. I repiled Not since 1986.

My personal favourite are the employers who ask if you are ill if you need to go to the loo on their time. They think you are ill if you cant shit to their timetable.

Well, you're a little ray of sunshine, aren't you?

Sam Cleasby, Disability Campaigner A person with an invisible disability has a right not to be made to explain their illness to a stranger. We need to understand that for many, using accessible toilets or disabled parking spaces is not a luxury or privilege. It’s a necessity in order for them to lead their lives.
Not every disability is visible – ‘Invisible disabilities’ - Senedd

senedd.wales/senedd-now/senedd-blog/not-every-disability-is-visible-invi

Sam Cleasby has struggled with such poor health, numerous operations, and times when she thought she might not live through the next day, whilst trying to make life ok for her children. The fact that she is so positive is not something to sneer at. All your nasty remarks do, is make you look very unpleasant.

@Allthefeel children, disabled people, obese people, people with a bad stomach, people who are rushing, parents trying to clean up wriggling toddlers, carers…

Speaking as a person with Crohn's myself, I have the right to not be subjected to toxic positivity or "inspirational" stuff about chronic illness. Millions of people with disabilities and chronic illnesses are fed up of this "inspirational" narative, but the media doesn't think it sells papers so they never publish it. They only publish stuff about the positive people because it makes other people feel good.

The receptionist has piss poor emotional intelligence.

I was also going to suggest keeping matches with you and agree with others that it’s low risk to strike and blow out over the sink.

The odour-causing compounds are still present after lighting a match, but they’re well disguised by the smell of sulphur dioxide which is less disagreeable.

Hope you can get your CD under control. A close relative has it too. Following treatment including surgery, it’s made life changing difference. Touch wood rarely caught short now. Appreciate different for everyone and you might not have the same treatment options.

Good that you plan to give your dr feedback OP. They should install an extractor fan if no window. You’re not the first or last person caught short in a dr’s surgery. Lack of planning not to have their loo set up for emergencies.

Wishing you all the best.

@IridescentRainbird It also puts pressure on all patients to be the Right Type Of Patient, that we're supposed to be positive at all times otherwise nobody will help us. It's not okay.

@IridescentRainbird- @Leavesofautumn doesn’t sound like an unpleasant person, she sounds like a person who doesn’t want to be told to constantly ‘be positive!’ ‘Look on the bright side!’ ‘Live the life you have!’ and all the rest of it.

Being ill and disabled can be really really shit and it’s ok and healthy to accept that fact and allow yourself to feel it sometimes.

No amount of positivity will make me be able to walk, or dance the way I always did- I don’t have to be positive about that the whole fucking time. I am in pain every.single.minute. I can’t run around with my son. My wife is also my carer… do you think it’s totally positive for her to be dealing with continence aids before we can shag?! I have a great life, I have friends and family and hobbies and holidays and all the rest of it- but I dont appreciate people implying that if I’m not always singing and dancing (ha!) and being positive I’m not a pleasant person.

I have Crohn's too and it's so humiliating. This receptionist sounds horrible,I would complain so she's hopefully more sensitive next time.

I use homemade VIPoo spray because they are expensive to buy and I get through them in bulk (although sometimes it's so urgent there isn't time to use it!). Recipe here for interested parties www.essentialsforlivingnw.com/dyi-poo-pourri-or-2-spray/

I'm sorry , you mistook what I meant. Nobody could blame you for not wanting to be positive all the time. . What I was objecting to was @Leavesofautumn criticism of a woman who is doing her best to carry on trying to be positive despite constant pain and debilitating illness. Actually, I don't know if @Leaves is ill or disabled herself. If she is, then I apologise to her as well.
My husband is disabled and I know that it isn't always easy to be cheerful and upbeat, either as the disabled person or as their spouse/carer. Wishing you and your wife all the very best.

@IridescentRainbird @Leavesofautumn This is so true. There is a horrible attitude from some of these ‘positivity’ types that if you are in fact disabled by your disability- you rest when you need to, cry when it hurts, get frustrated at limitations etc then YOU as a person are somehow to blame. Everyone should be the good cancer patient running a charity marathon all the time otherwise they are just whinging and bringing negativity on themselves.

I have Crohn's myself, and speaking as an actual person with Crohn's, that woman doesn't speak for me.

And then as others have pointed out, those sprays etc… can start allergies, asthma attacks etc…

Either way, the OP can’t win.

She is awful fir not having a spray with her and having bowel movements that smell.
But she would be equally awful (like the receptionist btw) to use a spray that can be triggering many reactions in other people.

So basically she is awful fir daring going out with a condition that make her poo smell.

You realise how ableist that is right?

Yeah that particular woman isn’t necessarily the problem so much as the fact that positivity in disability really can become a toxic stick to beat disabled people with when they don’t live up to that ‘ideal’.

That blogger might not be trying to create that narrative necessarily, but that is what the media (and thus large swathes of the population) run with.

Given that this was a GP's surgery. it should have occurred to her that it COULD be due to an illness.

You just don't pull a face, it's not hard
How do you think carers do it? I struggled at first but I wouldn't ever have commented or pulled a face, I stuck some Vicks up my nose and got on with it

Your comment is a little insensitive. I know it’s not done on purpose, but in the spirit of trying to help people understand, I’ll explain why. OP mentioned that they cleaned and tried to mitigate odours.
You know what’s really foul? Actually having Crohn’s. Using words like that doesn’t help people with a condition that already affects self-esteem.

Absolutely complain. It's a doctor's surgery FFS. She should know better.

It's not even about having a disability either! Shit stinks whoever does it. She shouldn't do this full stop, no matter whether the turd was via a disabled ass or not.
I have a stoma due to severe health issues. I never use public toilets unless desperate but only because I can get away with that. I do carry stuff with me that would disguise smells. It just makes it all less stressful for you OP. I had colitis so totally understand. Even in hospital some of the nurses do that. 🤷‍♀️🤣

This. I completely understand how it made you feel, but the lady was really just having a natural physical reaction to a smell and then trying to make the loo nicer for the next person. It’s part of her job to do the latter and you can’t always help the former.
I wouldn’t complain. All you can do really is try not to let that sort of thing get to you - don’t notice it if you can, and if you do, try not to care. I have Crohn’s too and it’s RUBBISH so I really do sympathise.
By the way, are you in any Crohn’s-specific forums? It’s a hard condition to understand for those who don’t have it and you can get some unhelpful (if often well-meant) comments posting about it on mumsnet. There are some really good ones on Facebook (if you join private ones, nobody who’s not in them can see that you’re a member or what you post) and there’s a good IBD group on Reddit x

Nope, scrap the first part of my reply, just read OP’s other comments with more explanation. Sounds like the receptionist was being OTT and needs some sensitivity training!

I’m sorry this happened to you, OP. My nephew has Crohns and used to get panic attacks because he dreaded this kind of scenario so much.