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.
Thanks for your awesome support and great news/have a peaceful weekend
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