My Mum was misdiagnosed with emphysema about 15 years ago.
She actually had a very rare condition called lymphangioleiomyomatosis (LAM) for which there is currently no treatment, but there are interventions that have had some success in arresting the rate at which the condition develops.
The pathology is similar to emphysema initially, except for the fact that women (and it is only women that suffer from this) experience spontaneous pneumothoraxes during their childbearing years - the main indication that it is not anything like COPD or emphysema.
Anyway, during her history taking, she was asked if she had ever smoked cigarettes, to which she answered “yes”. She had not smoked for ten years at that point, but something in the attitudes of the healthcare professionals seemed to change.
For ten years, whenever she went for her annual CT scans and medication review with her respiratory consultant, the question about ever smoking was asked, and she was made to feel that somehow it was her own fault that she had developed a chronic health condition.
Even if it had been down to her lifestyle choices - previous, amended lifestyle choices at that - it is almost inconceivable that the very people who were responsible for her care and wellbeing were in fact talking to her and behaving in a way that made her feel ashamed. This, on top of grappling with the notion that she had an incurable, chronic condition that was going to reduce her lifespan. This sense of shame prevented her from feeling able to seek meaningful support. She used to cry after her medical reviews because of the way she had been treated.
Then, from nowhere, a consultant decided to question the pathology of the progression of her emphysema as is wasn’t typical. That was when my Mum was given the correct diagnosis.
For 10 years she had been made to feel ashamed and embarrassed about her increasing lung dysfunction and decreasing quality of life. Ten years of feeling stigmatised and alone with her physical health difficulties, and by the time the correct diagnosis was reached it was too late for interventions that slow the progress of the disease to be implemented.
Symptomatic relief was all that was available. She died suddenly and unexpectedly last year. As a family, we had already accepted the fact that she wouldn’t make old bones, but my research into the condition indicated that we would have her for another ten years at least. She was 60 when she died. She had contracted an infection that her body just couldn’t fight.
That’s why I wanted to train to be a nurse. Which is what I am doing. I am a seconded (very) mature student. I have spent the last ten years in substance misuse.
Being a care maker gives me the opportunity to promote a framework of values that remind nurses and other healthcare professionals why they signed up for the (demanding) job. It certainly isn’t for the money, company car and other corporate perks. It is to make a difference to people’s lives when they are at their most vulnerable. It is to demonstrate love, kindness, compassion and understanding when people might need it most.
How dare anyone be made to feel ashamed for their illness by the very people charged with caring for them? Much has been mentioned about addressing the stigma attached to mental health issues, quite rightly, but there is just as much experienced by those managing physical illness - especially those chronic, long-term conditions that are influenced by lifestyle choices, perhaps, but no less painful to accept for it.
Melanie D’Ardis, second year, Postgraduate Diploma in Mental Health Nursing, Buckinghamshire New University