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amumdoingherbestamumdoingherbest Member Posts: 3 Connected
edited August 2017 in Guest blogs

Rebecca, 27, blogs about life as a mother to four children (two with special needs) at A Mum Doing Her Best. Today, she talks to us about her daughter’s undiagnosed condition and some of the comments and remarks she receives about it.

As a parent you are always going to experience someone who wants to give you unwarranted help or advice. This doesn’t stop when you have disabled child. All of a sudden everyone you bump into knows of someone with a similar condition, or worse condition and that we should be trying this or that or the other.

<Young lady - Rebecca - with her daughter, smiling at the camera with the sea behind them

My daughter has an undiagnosed condition, the consultants think they know which family her condition belongs in but they just keep coming to dead ends. No one knows why my daughter is the way she is, they can’t rule out life-limiting conditions, they can’t really say anything. She finds certain things impossible to do, some things hard and other daily activities easy.  I have noticed that people tend to suddenly become a medical expert when they find this out.

For example, I mentioned to someone a few months ago that the doctors were considering a rare form of Muscular Dystrophy and her reply, “I know someone with proper Muscular Dystrophy she hasn’t got that.” Yes, she used the word proper, she is not medically trained and it made me feel so small.

I have so many people on a weekly basis saying:

“There’s nothing wrong with her, my [insert child’s name here] was slow but they all catch up by the time they are at school.”

Or my favourite:

“My friend’s friend’s friend’s cousin’s son, he has [insert a condition] and this means he is extremely poorly, you should be grateful that your daughter hasn’t got anything serious or terminal.”

I have learnt everyone is suddenly medically trained and knows better than my daughters team of consultants; I have learnt how to deal with these comments and to smile, nod, then walk away; that people give advice that actually could harm my child. Telling me to “just give her solids, nature will kick in and she will learn to eat it.”

I have also learnt I am a mother bear and will do anything to protect my child. I will teach her the qualities of grace and she will grow up knowing her differences are beautiful and what make her so special, so that if she ever has to deal with the negative comments of strangers she will know how to respond.Without a diagnosis or physically seeing some sort of equipment or a limb missing, people assume my daughter’s condition is not that bad - that instead of asking about the condition people will tell me what to do or what not to do.

Have you received any strange, bizarre or rude comments from strangers about your disability? How did you respond? Share your stories with us below.


  • NystagmiteNystagmite Member Posts: 608 Pioneering
    Um, where to start:
    - oh, your eyes wobble? Doesn't that just affect your confidence? No, love. It also causes chronic tiredness, poor vision, balance and the list goes on.
    - you could just wear stronger glasses. I wouldn't be able to see if I did.
    - you wear glasses; so you must be able to drive. You've just chosen not to. I wish. But I can only see 5-10 metres, there's the tiredness, there's the fact that I can only read 3 lines on the eye chart on a good day with my good eye, (you have to read double to drive) I can't judge the speed of cars.
    - you'll be fine if you stop thinking about it
    - your Autism can't be that bad because you're not getting help from Social Services. No, I'm not getting help because of their refusal to a) believe I have Autism and b) because of their ignorance of my condition and needs.

    I've also had the whole "I know someone with that and they were cured" or something equally ridiculous. It turns out they have something completely different.
  • Liam_AlumniLiam_Alumni Scope alumni Posts: 1,113 Pioneering
    Thanks so much for this great guest post, @amumdoingherbest!
  • amumdoingherbestamumdoingherbest Member Posts: 3 Connected
    Thanks so much for this great guest post, @amumdoingherbest!
    Thank you so much for your comment. 
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Oh blimey @amumdoingherbest how frustrating for you!!! 

    Im a mum of 3 and I know that even without any disability or illness that the world seems to think it is an expert in all areas of your life!! I remember being gobsmacked at some of the comments I got when mine were babies!! My youngest didnt walk till just before he was 2, I knew it was because he had a brother and sister 2 and 4 years older who did everything for him! And I had spoken to the health visitor about him.  Another mum at playgroup told me that I should get him to a consultant because he was obviously extremely delayed!! One day he just got up and walked clear across the living room!

    I have a chronic illness called ulcerative colitis and I am always being told that if I just changed my diet/got more fresh air/tried taking honey or coconut oil or vitamins that Id be fine.  Its very frustrating!!
    Senior online community officer
  • Lynne53Lynne53 Member Posts: 52 Courageous
    I have several conditions and my social world is full of experts on all of them. I only know two people who can see the problems and pain I am having but cant get be certain what the cause is, a Professor of Neurology and a Consultant orthopaedic surgeon.
  • cocoaandmilococoaandmilo Member Posts: 4 Listener
    I know exactly what you mean and my heart goes out to you. May I say you know your own child best and I don't feel that other people, who aren't medically qualified, have the right to to give you 'advice'.
  • NystagmiteNystagmite Member Posts: 608 Pioneering
    As a young adult, I get comments about how I'm too young. And because I walk, I can't possibly have anything wrong with me.

    Did once have a bus driver accuse me of stealing my disabled persons bus pass. Would love to know where he got his medical degree and how he knows just what I see.
  • lilbibbolilbibbo Member Posts: 1 Listener
    I've always done my hair and makeup since I was in the business, so it takes a lot longer now I have arthritis and fm, but I still want to look nice.
    I parked in a disabled bay at Tesco with an older woman in the car next to me, after three attempts at getting out of my car seat I finally got upright-the woman looked me up and down then said "I was wondering why a young glamorous lady was parking in these bays?"
    well,me being usually polite and taught to respect my elders went straight out the window, I replied with " oh I'm sorry I didn't realise it was only old and ugly peoples that were allowed to be disabled"
    so unlike me but I saw red that day! I have to say that it' wasn't an unusual comment to me, even my old gp told me to stop wearing makeup and doing my hair because people couldn't tell I was ill!!
  • ourvoicesourvoices Member Posts: 47 Connected
    edited August 2017

    Hi @Lilbibbo,

    I thought that I was the only person to react really badly to someone being surprised that (as a disabled person) my appearance is important to me.  I've had people jump out of their cars (in Disabled Parking bays) as my husband has got out ready to poor scorn on us, only to eat humble pie as they watch me struggle. 

    Sometimes people do forget that you can be young (sadly I'm not really anymore) and have a disability and that Blue Badge parking bays are not for the 'elderly' but for a huge range of people regardless of our age.

    Recently, I was also surprised to find out that Health Professionals make observations about your appearance in face to face interviews for benefits.  Why is it assumed that someone with anxiety or depression will look dishevelled and not well presented?

    My teenage daughter became very excited a few weeks ago when we were out together because she spotted some beautiful (slightly funky) shoes that I had seen on the web.  They were perfect for me because they have a low chunky heel and a strap to hold them on.  For a moment the shop assistant fumbled, when she realised that I wanted to try them on. 

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hell this really annoys and irritates me.  We are all born different and regardless of shape size colour.  People just seen to give their view and unwanted opinion of you.  I was born with a genetic condition.  Getting through the day with out someone who thinks they are better than you and gives you the once over.  That would like to know why and how you have fingers missing.  It is disgusting.  I had in my lifetime the experiences of being in a work situation.  The unwarranted attention and comments at the interview stage of any job I applied for.  I could have been a millionaire for the amount of compensation claims against companies.  Used every trick in the book to abuse the system.  Make you feel not part of society and the work place.  Especially somethings the bosses dreamed up like lets have a disabled day.  All staff told to make a fuss of me.  Yet most days I finding them totally ignoring me.   Told by many people that I should not drive you might kill someone to not wanting to shake my hand fear of thinking they might very well catch something.  From people in shops shouting look at that man he has got fingers missing to complete stares.   I know it has effected me mentally and had therapy  I only go out when I need to and have great support from my mental health charity.  I only go out when I have to use times like early morning shops.  Avoid people in crowded shops.  My anxiety gets really bad around when the children are off school.  They always want to know why I am different.  The problem I have is with the parents who say keep away to words to that effect.   No one just how hurtful that makes me feel.  As for friends I have few because they do not have the patience and tolerance.  I am slightly deaf and have walking problems.  I try to make friends then I become a victim of mate crime.  Joined a men's support group then a few years ago the bloke running it had know idea to treat me and to talk to me forever patronising and ruffling my hair like a ten year old. The attitude got to me and I have left.  I have now in a mental health charity and we have group sessions.  I do feel accepted the struggle still goes on .
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  • ourvoicesourvoices Member Posts: 47 Connected

    Hi @thespiceman,

    Sorry to hear that you are having some difficult times with everything, I'm sure there are lots of people here who can relate to what you have and are experiencing.

    People do sometimes say and do the wrongs things (even when they are trying to be helpful). I also know that I am the worst person at letting people know when I do and don't want help, which probably makes things worse.

    The other day, my husband pushed my (self-propelled) wheelchair across the road and up a slope into a café.  A member of staff asked where we would like to sit and then started pushing me towards a table. 

    I knew she was trying to be helpful (and probably assumed I wasn't able to push myself), but I did feel annoyed.  You wouldn't take someone else by the arm and take them to a table or grab a pushchair and move it.

    My husband was also annoyed, he came over and put the handles down, so that no-one else could move me.

    It was a helpful gesture, that just didn't feel helpful (to me).

  • SuewithlupustooSuewithlupustoo Member Posts: 6 Connected
    People generally mean well but it doesn't help. I get "Go out, get some sun" I'm photosensitive so that's why I cover up. I get " Go swimming, join a gym" Getting dressed and undressed can take up to half an hour a go, some exercises are counterproductive and set off flares. Helpful advice is irritating but it doesn't bug me anything like the  comment "Can't you go any faster"? My reply "No, but I can go slower". Another one is "I read somewhere if you drink the juice of the whatever you'll be cured"! If that was true I'd be 'cured' by now! The worst is "I read that people give themselves what you have because..." No I didn't give myself anything!! My reply may be "Oh really, please give me your insight into.... I wasn't aware you were a highly experienced...". Sometimes I'm just too fatigued to be bothered. 
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I have been suffering spinal discs collapsing for 12 years and almost everyone says "I get back pain too, really bad sometimes". One guy even said his was so bad sometimes he couldn't get out of bed, I almost hit him. Suffering chronic pain in the legs I am severely crippled and walk with sciatica pain levels very often.

    I have felt suicidal every day for 2 years. On one occasion I rang the Crisis Line and the psychiatric nurse (so called) said "Stop being stupid and pull yourself together". I hung up and OD'ed.

    The worst of my pain is neurological and comparing back pain to my pain is like comparing early toothache to an abscess but I still get comments like "But it's only a little pain". I wear Fentanyl patches at 75 micrograms per hour.

    *** this is not meant to offend anyone ****

    The pain has me severely crippled and, in the last 4 days turned me into a eunuch. In a year or two will put me permanently in a wheelchair and, in a decade or less, will see me bed-ridden. I am likely to suffer for a further 20-30 years yet. No treatment, no cure, no hope of either, no support from anyone including family, GP's, hospital, mental health or social care.

    **** this is the bit that might offend ****

    When people say to me "Well, at least you don't have Cancer" they don't understand why I reply "I would swap this for Cancer any day especially if it's terminal".


    There is a famous saying that states :-
    "The worst thing that can happen to a person is to have no hope at all"

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • NystagmiteNystagmite Member Posts: 608 Pioneering
    Topkitten said:

    **** this is the bit that might offend ****

    When people say to me "Well, at least you don't have Cancer" they don't understand why I reply "I would swap this for Cancer any day especially if it's terminal".

    (not aimed at you)

    I've never understood all this "well at least it's not terminal" or "at least you can do x y z". It's not a bloody competition. And yes, I can do some things; but those some things can come at a price.

    And then there's the staring. I was taught it was rude to stare. Was anyone else? Seems not. Yes, I know I look different. Not that I would justify to you (a complete stranger) why I wear dark glasses. I've explained that once - but he was 5 and a relative. He was genuinely curious, rather than being rude about it.
  • MarkmywordsMarkmywords Member Posts: 421 Pioneering
    I sometimes get funny looks because my disabilities don't show. Thankfully they have been wise enough to keep quiet.

    I've noticed many times at the car park where retired people appoint themselves to be the Blue Badge Police.

    Well I have had cancer and felt the mind-numbing, paralysing pain where tumours are slowly bursting the body apart but I couldn't even raise a scream. I thought the worst was over when I got the all-clear.
    But no, the treatments went very wrong for me and I'm left with a body that falls apart a bit more every day. A life sentence of up to another 40 years.

    I often have to put the doctors in their place though !
    They are trained to believe in "life at any price." They can't deal with it when I say "Thanks but I'd have been better off if it had been allowed to take me."
  • NeildbNeildb Member Posts: 1 Listener
    edited August 2017
    Them:  You have Muscular Dystrophy?  Have you thought about joining a gym and doing some weights?"

    Me: No, in 35 years I've never thought of that.   
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    I write a blog about my illness and got a message the other day from a random person telling me that its not like I have had my legs cut off and I should stop complaining... He didnt seem to get that its not a competition!
    Senior online community officer
  • NystagmiteNystagmite Member Posts: 608 Pioneering
    Someone posted a whinge on FB. In short, they're partially sighted and asked if anyone else had got a blue badge. I responded and said no and how useful one would be. (I'm also deaf and can't hear where sound comes from, which even with help, makes crossing the road / car park difficult) Some delightful person responded with "well, I manage, so why can't you?" As with anything, it's a spectrum. When I registered in 2007, I was borderline for being able to register / drive. I can read a few lines now.

    I get the same with my Autism. I've met people who, for want of a better word, do pass as completely normal and are able to function fine in society.

    And  then there's the medical profession. I've had some really odd comments from them. I've had problems with my ears for some time. GP says there's no infection or obvious issue. Audiology claim it's impossible to have both hearing and sight issue. Um, what?
  • MarkmywordsMarkmywords Member Posts: 421 Pioneering
    I think what this all comes down to is that some people think "Yuck, that's nasty! Do something to keep your freakishness from bothering us NORMAL folk."
  • anaqianaqi Member Posts: 54 Courageous
    I was once told I should drink Heineken because it refreshes the parts other beers cannot reach!
  • ourvoicesourvoices Member Posts: 47 Connected

    I'm really shocked and saddened by some of the things people have shared here. 

    If we were animals, people would want to help (e.g. ducklings stuck down drains, abandoned dogs, the ivory trade etc.) and posting their heroics on FB - instead people say hurtful and misguided things and then leave you (us) to get on with it.

    Although, I shouldn't tarnish everyone with the same brush - there are some great people, charities, support groups and other organisations who work hard to help others.

    It's a shame it doesn't filter down into everyday life.   

  • TigTig Member Posts: 1 Listener
    I have several chronic conditions, and like many others I've had so many strange comments.
    But one came to mind as I read these. I have endometriosis, and two of the drug treatments I had many years ago caused massive weight gain as well as chronic joint problems.
    One acquaintance, on hearing I was about to have a hysterectomy and my ovaries removed told me I should ask my surgeon to do liposuction at the same time.
    Because having surgery while asthmatic doesn't have enough risks?
  • ZeezeeZeezee Member Posts: 80 Pioneering
    I have already had some ridiculous comments about my three year old daughter who has quadriplegic cerebral palsy. From people actually arguing with me that her special needs buggy is just a pram so I have no right asking for disabled access and should carry it up the 7 steps.
    A doctor telling me in a very patronising and rude voice that she can't have quadriplegic cp as she just moved her leg. Seriously a Dr. at the walk in centre. I was so gobsmacked that I just explained politely that quadriplegic means all four limbs are effected not paralysed.
    The one I hear on a weekly basis and is really beginning to annoy me is when people realise she can't walk, which is everyone who looks at her at the moment as she tells everyone " I have cerebral palsy and I have to drink soya milk cos cows milk makes me poorly ". They then stop and talk to us. But most of them say " oh well she is sooo pretty, it doesn't matter about the cp her looks will get her everything she wants in life". I mean REALLY. I don't even know how to respond to such unbelievable stupidity. And so many people say it.
    I have been accused of stealing her blue badge as she is obviously too young for it to be hers.
    Had to endure a lecture about how selfish I am using the Goto trolley in Asda as it is for disabled children and not just parents who fancy using it.
    The list is surprisingly endless and my daughter is only three.
    But she has a pretty face and lovely hair so the constant pain she is in, the fact she will probably never walk, she can't coordinate her hands to feed herself even with a bottle, none of it matters because she is pretty.
    The sad thing is that it is just starting.
  • ourvoicesourvoices Member Posts: 47 Connected

    Hi @Zeezee,

    I would love to tell you that it gets easier, things may well improve and we all hope that new technologies and treatments will help us manage our conditions better, but for now we have to make do.

    It is very frustrating when the medical profession gets things wrong too.  Sometimes I wonder why they don't read medical histories or look something up when they are not sure.  It's ridiculous that someone (qualified) should think that CP causes paralysis.

    Well done for staying calm despite everything - I would have gone bananas.

    I'm still trying to work out what to tell people when I open the front door and they see someone in a wheelchair.  It's the "Oh..... silence" that makes me feel like I need to explain. 

  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I never worry about how much I upset or take a dig at healthy people for their stupid thoughtless comments. I do care about any disabled person I meet and try to support rather than criticise. We are all different though and it's often difficult to understand all the different types of disability and inevitably we all make dumb comments at times.

    I do not object to the help and assistance that Cancer sufferers get. I just wish that all disabilities  received equal assistance. Ofc, as the government seem to think the only serious problem is Cancer, that will never happen.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Barrylad1957Barrylad1957 Member Posts: 100 Courageous
    edited August 2017
    @amumdoingherbest, everyone's an expert when it comes to football, motor racing, and other people's kids. My grandson has a condition which was described by professionals when he was an infant, as "very, very rare indeed"; odd then, that every single person I've ever met when he's been in my company (he's now 18) has someone in their family who has also "had that", and has had far worse experiences than we have, and all manner of wacky ways to deal with it/combat it/cure it, in ways as diverse as "cold/hot baths", "just ignoring them" all the way up to "weightlifting", and/or "karate lessons". It beggars belief, but it happens, and it will only serve to make you stronger. Personally, I admire you, and its great that you can recognise this as a symptom of other people, and consign it to the bin of meaningless, uncaring waffle. Keep on doing what youre doing. Excellent post, and thank you for sharing it.
  • amumdoingherbestamumdoingherbest Member Posts: 3 Connected
    Wow it is amazing to read everyone's stories, I knew it was common to a degree but some of these stories just show what a fight we deal with/my daughter when she's old enough will deal with.

    Yes I ignore and take comments on the chin most days but sometimes that in its self is draining. Living with disability whether it you or someone you care for is one massive fight against society, I am starting to realise. 

    I hope one one day it isn't. 

    Thank you all for sharing your comments on my post :) 
  • the_velvet_girlthe_velvet_girl Member Posts: 107 Courageous
    When I was viewing a flat, my potential flat mate stated that my CP was caused by lack of protein in  my diet as I'm vegetarian! He insisted on making me a protein shake and a burrito despite me commenting that it would be a miracle meal if it cured brain damage! Needless to say I didn't take the flat!
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