The way in which we care for sick children has, thankfully, changed beyond measure since I was diagnosed seventy years ago at the age of three. Many members on this forum have been diagnosed as adults. This has brought with it its own problems but also, hopefully, a societal acknowledgement that you are struggling with an illness. Maybe sometimes the worry of stigma because you cough, but the support of other lung buddies to cope with that.
There are a group of us, however, who have spent our whole lives knowing that we are ‘not nice’, ‘the other’ and that in some way this was our fault. At the same time trying to have as normal a life as possible in the face of the physical and emotional effects of bronch and the struggle to access proper treatment for a much neglected condition.
I thought that some of you might be interested in, and also many of you will recognise your own experience in my vivid recollections of my experience of hospitalisation for diagnosis and the doctors’ reaction to me following it.
This was the first time that I realised that I was not the same as others and that it was my fault, the beginning of my journey of self knowledge, throrough dislike of hospitals and the medical profession and a growing determination to help others to live a fulfilling life with bronchiectasis.
Please scroll on by if this is of no interest to you.
The Diagnosis
After six bouts of pneumonia up to the age of three it was decided to give me a bronchoscopy.
I remember holding my Mum’s hand as we walked up the wide stone steps of the hospital in Dudley through the double wooden doors into the smell that pervaded all hospitals throughout my childhood. The disinfectant they used it seems.
We sat in a corridor then a nurse came, told my Mum to go home and took me into a bathroom. She took my clothes off and told me to get into the bath which had about two inches of luke warm water. I was a very shy and fastitidious child, shamed at being without my clothes in front of her. I told her that I had already had a bath but she insisted that most children were ‘dirty’ and that I should get in. After about three minutes she took me out and put some sort of scratchy nighty on me.
Then she covered my very long hair in foul smelling liquid and proceeded to go through it with a nit comb. Again telling me that it had to be done because ‘most chidren have nits’
My Mum had gone. They took me to a glass cabinet in which there were two beds. They shut me in. It turns out that this was an isolation cabinet and I was put there because there were no beds on the ward. There was a little girl in the other bed. Her arms were bandaged and tied to the sides of the bed. She cried, coughed and shouted continuously. She had asthma and psoriasis and was tied up to prevent her scratching herself.
Then they came round with the virol. She vomited hers down her nighty and was smacked for it. I was terrified of being smacked so tried hard to keep it down in spite of hating anything sweet because, combined with the constant phlemb, sweet things made me feel sick.
The rules of isolation applied to me even though neither of us were infected and nobody was allowed into the box to me. I could not understand what I had done that this was my punishment. My Nan came to see me. I adored her and she me. I remember crying as she stood outside the box and put her hands against the glass and I put my hands against hers. She kept smiling but told me many years later that she broke her heart when she left the ward. She felt so helpless in the face of authorities who were treating me worse than a caged animal.
I remember little of the actual bronchogram except that they had to keep giving me injections because I would not go to sleep.
I woke up gasping to breathe and covered in sick. A nurse was bending over me, ‘ oh what a mess you have made of your nighty’ she said and was obviously very cross with me. I was mortified. I had always been taught to make sure that what I coughed up went into the toilet and in my mind, I had covered my nighty in it.
They managed to give me pneumonia and so I had another two weeks in hospital. On the ward now. My family brought me a doll which was taken off me and given to a girl with a broken leg who they said had no toys.
They were, quite frankly, vile and very cruel to me. I won’t bore you with the miriad other details. I think that you get the picture.
The most damaging thing happened some time later when my Mum and I went for the results.
My usually feisty Mum sat on a chair, obviously very nervous and I was made to stand beside her in just my knickers. We faced a table at which there were five doctors, all staring at me. The one in the middle pointed to an xray to his right. My lungs, covered in clouds. ‘ You see this, he snarled, this is you!’ and he pulled a face that made it clear that I was horrible, he was cross with me and it was my fault.
That was it! The feeling of utter shame that swept over me has stayed with me and fuelled my determination to appear ‘normal’ for the rest of my life.
Never any kindness, empathy or hope for the future.
And so began a lifetime where my Mum set out to find the right treatment to keep me alive and give me the quality of life that they were telling me would be impossible to achieve. Together with my hatred and distrust of the medical profession, which still festers and propels me to help others to get the treatment that they should in the face of ignorance and complacency.
If you recognise this I hope that it helps to know that you have not been alone all of these years. If your experience is different, you are lucky and have benefitted from the struggles of those who went before and the superlative efforts of the few amazing doctors who strove to bring bronchiectasis to the fore, together with those who have picked up the baton along the way.
Oh Littlepom, how awful! It reads like a scene from Dickens! I'd forgotten how coldhearted the medics could be. Thankyou for sharing this and for battling to be heard and paving , hopefully easing, the way for other sufferers.
Thank you for sharing. I’m so sorry for what you experienced as a child. All of it so horrible. My bronchiectasis was diagnosed six years ago. We are the same age and era. I had my tonsils out when I was 3. The nurses were so mean. I can see my whole experience vividly in my mind. Thank you for all the times you respond to people. I’ve learned so much from you. You always give support and hope to us.
I hope that my post will allow others, like you, to examine their feelings about hospitals and medics, especially the authority that they have taken and society gave them to treat children, and indeed all patients as they did. Back then, doctors were God. My family never thought to dare to challenge the nurse who took me away from my mother or her assumptions that all children are dirty when I was frightened and trying to tell her that I was clean. Can you imagine parents today not challenging their child being locked in a box like a prisoner.
Unfortunately, my experience with my near death experience at the hands of a cardiac surgeon in 2021 have re-affirmed that they still do not listen to patients which leads them to make huge and damaging presumptions.
What a terrible experience for you and no wonder you’re so vehement for us bronchiectasis patients to stand up for ourselves. You’re a true inspiration and I’ve learned a lot from reading your posts. Please keep up the good work!
Oh Little Pom, that’s awful. Difficult to believe that children were treated so badly all those years ago. For me, it explains why I have this unexplained fear of hospitals. My experiences were nowhere near as bad, but I had my tonsils out in the early 60s and remember some examples of bad treatment, and also when I broke my collar bone and had to spend one night in hospital. The boy in the bed opposite me disappeared during the night and we were told, in a very marred of fact way that he had died. I was 6 years old! I’ve never really thought about my fears of becoming a hospital in patient, and it’s only in the last few months that I’ve agreed to go on the waiting list for a knee replacement!
Littlepom thank you for sharing this nightmare diagnosis, the only thing I can say is that my diagnosis would never have been possible without you and cofdrops blogs. I was treated fantastically well after reading your advice to be proactive, I was referred to Wythenshawe hospital and luckily have stayed extremely well without you and this forum I would've been very unwell, so again thank you x
It's so heartening to hear of experiences like yours. If those of us who have trod this path all of our lives can help others to find their way to good treatment and management, it is all worth it.
I was diagnosed for certain, at age 16 though I’d had pneumonia several times and every other infection possible, couldn’t run as a child without getting out of breath. The bronchogram was hideous, strapped to an X-ray table, stuff pumped into the lungs and the table tipped around so it would go into all the parts of the lungs. I was sick and coughing, luckily Mum was with me. Returning for the results, the consultant in Liverpool wasn’t bad for 1962, pointed to variou bits saying it wasn’t worth operating to remove damaged areas, but really there was too much scattered around. Later it was decided my lungs were damaged as a result of a difficult breach birth. I am now 76 and have had a full and interesting life….more to come! just recovering from covid after having all the jabs and shielding.
My Mum had to stand up to those hideous doctors to prevent them from operating on me when I was three. When we met the radical doctor who gave me the full life that I have had by instituting the treatment and physio that has gradually become standard three years later,he said that she had saved my life. This is because, like you, my damage was too diverse and to cut it out would have left me without enough tissue to exchange oxygen. With the damaged tissue in place I could learn to use it. It’s so good to hear that you have done so well and like the rest of us, stilly feisty and standing.
Thank you for sharing. I’m sure that must have been traumatic to revisit. I was sent for ct scan by my vasculitis team nearly 10 years ago who noticed I coughed a lot. I can remember them telling me the results were interesting as they showed up Bronchiectasis! I was then quickly referred to respiratory. I can honestly say I am very lucky with my MDT and cannot fault the a&e staff who I saw on my recent visit. I can recall the awful treatment I received when I had my first baby. Husbands weren’t allowed to stay then and the midwives were truly awful. It makes you wonder why they went into a caring profession. You are an inspiration to all Bronchiectasis sufferers and have helped so many of us. X
Oh my word what dreadful memories you have LP and no wonder you feel the way that you do about the medical profession. I would say thank goodness we live in different times but after the last episode you had I am not so sure this applies. I am just grateful that you were the first person that replied to me when i joined the site and gave me such an informed response and advice on what to do. Support on this site is invaluable to us all, so thank you for your continued support x
it is very heartening to know that things have moved on. However, it is only too clear from the difficulties that many still have in getting a diagnosis, together with the ongoing treatment and management, that we have some way to go. One by one we will help each other along the road.
thankyou Dawn. I think that there are a few of us on here ( cofdrop especially) who could contribute to a book which would make the readers’ hair curl.
thankyou for your very supportive reply cofdrop. I had fun deciphering it. I know that you had an even harder time than me and from earlier. Your spirit and companionship on this rocky road keep me going.xx
your tale is so harrowing. How awful for you. Mind you after my last stay in Hospital a few weeks ago I never want to go again. It was absolutely dreadful.
I really feel for you and your experience. Things did change and hospitals were caring and probably very good with Children. But it’s now all going backwards again. Nobody has the time for anyone. I told them the next time I go in it will be feet first. My tale was nowhere near as you had when you were a Child but mine was bad enough. Xx
i agree. It is disappointing that after some improvement, things just seem to be going pear shaped. I can only hope that the improvement in the treatment and attitude towards children continues
Oh, that is so moving. I'm surprised you were not permanently embittered by this experience. Thank you for all you do for us now. You have turned evil to good.
I'm so sorry you and your family went through these horrors, Littlepom. We hope that things have changed but it's a question of degree and I believe that there are still too many "health" professionals who need to walk a mile or a hundred in the shoes of the unwell so they can develop some empathy and plain kindness. Yes, so many are still treated as "other." My experience with this, firstly having been misdiagnosed with "Chronic fatigue" and virtually told my pain was not real, then having a "non-contested" ie, acceptable diagnosis of inflammatory arthritis where suddenly my pain (the same pain!) was legit and I was offered actual pain relief instead of judgement and insults. (Similar path with bronch diagnosis though lucky with good GP). The other experience, heartbreaking, was two of my children having mental health challenges and being mistreated. Definitely, in the "austerity" years in both UK and Australia, treated like second-class citizens. We came through and they are two amazing, successful people but only through advocacy, determination and the same kind of amazing resilience your family and you showed, Littlepom.
You have certainly been through it, both with your own problems and trying to get the best for your children. When you can look back as you do and know that you triumphed despite all it is something to be very proud of.
Yes I can relate to all you have said LP. I was diagnosed with Bronchiectasis at 5 years old. Whooping Cough and Bronchial Pneumonia were the culprits for me.
I remember some dreadful times in hospital. Hilltop Hospital, Bromsgrove 1955.
For example I told the nurses I didn’t like porridge. My mom told them too. I was forced to eat it and when I vomited over the table I was punished by having to stay in bed all day and not play with the other children.
Mom had to catch 4 buses every day for 3 months to visit for half an hour. My Dad drove straight from work on his motorbike to catch a glimpse of me through the window (visiting time did not allow him to come in) and take her home.
The only member of staff was the lovely Matron. She bought me a tiny matron’s outfit and I accompanied her on her morning rounds.
Bittersweet memories. Not expected to live, I had a 2 lobe Lobectomy. I’m 73 and love my life. I count my blessings. Diane x
Oh Diane, your story really choked me up. Why were most of them so cruel and why didn't they listen to us? Unfortunately, many medics still don't listen which is why my action against the cardiac surgeon who nearly killed me is going ahead. If he had listened it wouldn't have happened. I am collecting a fine group of 'great survivors' as a result of my post. You should all be so proud of yourselves. Only we know what strength of spirit ( and yes, an amount of bloody mindedness)has meant that we have led full lives whilst carrying this burden of a constantly debilitating condition and having to fight medical complacency and ignorance along the way. X
Oh dear god, what terrible experiences you & others here have had. How on earth can people treat small children so unkindly, cruelly even. Things are so much better now (parents can stay for a start.)
I’ve never gone along with the idea that all nurses are angels. I’ve met some really mean and heartless ones, and wanted to ask what on earth they’re doing in a caring profession! I think the frail elderly especially get a rough time at the hands of the nursing profession. Of course they’re so vulnerable, and easily bullied or ignored. Makes me weep
oh little Pom I was crying reading this and how you were treated aged 3 Gosh how traumatic and bad the people there to help you made you feel. Thank goodness medicine has improved in many ways Thank you for sharing. Xx🤗🤗
I just read your story again and was in tears for the little girl they treated so badly. Ive learned to not be treated badly by anyone. But you were only little and in those days the hospitals knew best. But not any more. They have really gone backwards. At least where I was had. Xx
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