"Feeling belittled and unheard"

I have what’s considered a rare medical condition. Often I have to go into hospital for treatment of this genetic condition as it affects my heart and joints. Sometimes the medical intervention that is required cannot be done outside of a hospital environment. Yet, when I present to ED I am often dismissed by doctors and told this isn't an ED issue despite my GP sending me in.

It is known within my regular treating team of specialists that I do everything I can to prevent having to present at the ED. On countless occasions, I am treated like a hypochondriac despite genetic testing that shows it's actually a biological condition, not at all psychological.

I have been told by the emergency doctors that they don't want to speak to my cardiologist or physicians as they don't want to be seen as being stupid. When I have requested to speak to the consultant I’ve also been told the registrar did not want to bother the consultant. Doctors; projecting your insecurities onto your patient is a terrible idea. We are the patient there to seek medical help and we are not there to nurse your insecurities. If you don’t know much about the patient's medical condition – ask the patient! Or Google the condition. As the patient, we know our bodies better than most given we live in our bodies 24/7. I respect that as an ED doctor you cannot possibly know all the medical conditions however you could listen to us. I say ‘we’ and ‘us' because I know I am not alone in this.

I wish I could say this experience was an isolated incident but it’s not. The week prior when I had presented to the ED, the triage nurse listened and recognised I was there with a solid reason to seek emergency help. However, the doctor who saw me dismissed the medical reasons I was there. They did not do bloods, they did not do basic medical assessment and decided that they knew better than my treating team and advised me to stop a medication and to see a specialist that had absolutely nothing to do with the reason I presented to the ED. I was advised to go home and give the bed to someone else. The nurses were gobsmacked as the reasons I presented were valid reasons to present and none of that was investigated. When I went back to my GP she was mortified and wanted to send me back to ED because the issue was considered a medical emergency. I refused as the trauma from attending the ED less than two days prior was still fresh. I couldn’t face going back to risk going through what I went through again. A week later I was still having the same troubles so I had to go back to the ED. Once again my valid concerns were diminished.

I am yet again feeling shoved out because someone doesn't understand my medical conditions. Yet again I feel like a waste of space because they don't understand it, nor were they willing to learn how it affected me. I am more than happy to educate doctors about my conditions as I feel this might bridge the gap but they need to be ready to listen.

I just want to be respected and heard.