The EDS Lass writes about life with EDS, articles on relevant topics and her medical journey.
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When I was twenty, my lung collapsed. Spontaneous pneumothorax are serious and can be fatal. The response from medical staff was my first significant experience of the danger of assumptions and gender bias, where it is assumed that female patients are hysterical rather than physically unwell.
I had a spontaneous pneumothorax (lung collapse), of my left lung. In the evening I experienced chest and back pain. It was severe. I returned home via taxi, but in the short journey I went from being able to speak to struggling to breath so severely I was unable to speak at all. My then-partner then called 999 and an ambulance was sent.
The ambulance crew attended and quickly assumed nothing was wrong. I was given a false reassurance that nothing was wrong. I was told “don’t worry love, it is just a panic attack“. I remember so clearly hearing those words and consequently realising that I was in trouble; not only was there something seriously wrong, but that the medical staff had no idea there was a problem, as they assumed otherwise.
At hospital I waited for over an hour struggling to breath. I knew that the ambulance crew who handed me over would have told them my case was simply a panic-y young woman. Sitting, trying to breath, realising how dangerous assumptions were, it really struck me that even in hospital during a serious medical issue, patients will not get investigation or healthcare unless the staff consider that the young female patient may be unwell. I felt unsafe.
Finally, staff listened to my chest, and seemed to be concerned and I had an xray. They realised it was a lung collapse, and the situation changed; they were in the rush and concerned. One staff member leant over me and said to me in a very stressful voice “don’t worry!” while they clearly panic and I simply continued to struggle to breath.
They rushed to insert a chest drain.
While I waited to be admitted to a ward, one of the ambulance crew came to my cubicle. He simply said “we heard it was a spontaneous pneumothorax”. I simply replied “yes”. At the time I didnt have the words to ask him to please not make assumptions in the future, or to say how terrified the assumption had left me in the very real physical situation.
I was in hospital for 4-5 days while my lung slowly reinflated. I had a number of xrays over those days to check the progress.
Despite a spontaneous pneumothorax being a possible indicator of EDS, the condition was not considered as an underlying condition which caused the collapse.
The EDS Lass 