How do you deal with the ER,Doctors, Dentist, Hospital ETC

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I have a history of a heart arrythmia (AV node re-entry techycardia). This has meant many ambulance trips to hospital and many times I've had my heart stopped and restarted by the doctors to reset the rhythm. (It runs at between 180 and 220 bpm so it has ot be slowed down before I get heart failure.) The AVNRT used to happen randomly so I couldn't prepare ahead of time and when I was cardioverted (heart stopped and started again) it was done in Resus with lots of staff around the bed. I found all of this really difficult. Some of the difficult things were:

1. With lots of people staring at me I tend to close my eyes but they need my eyes open to know that I'm not losing consciousness, so they always say 'open your eyes' all the time.
2. There is lots of noise in resus - the machines beeping away, the staff organising things, announcements ove rhte PA and the rooms are usually without curtains or carpet so the noise echos and reverberates off everything. Also, you can't wear earplugs because they need to be able to speak to you.

At other times, for less urgent treatment the things I find difficult are:

1. Music playing in the waiting room.
2. Too many people too near me in the waiting room. (Some people have strong smells - everything from after shave to body oder.) Plus sometimes they sit so close they touch me and I don't like that.
3. When seeing the doctor I find it very hard oif one doctor contradicts another and veen worse when a doctor write to my GP and what they say in the letter is different to what they said in teh consultation to me. Sometimes I wonder if they're writing about the same patient.
4. When there are inconcistencies or when I am unable to explain somthing so the GP understands my frustration level goes really high and I find it hard to talk becuase of the lump in my throat where my body wants me to cry. Sometimes I do cry and sometimes I lose it completely.

(There has been one time when my noticing an inconsistenciy was very helpful to a safe outcome. One doctor went through with me what levels of a certain heart medication were safe for me. 18months later another doctor tried to put me on twice teh safe dose. I explained what the other doctor said and was told that if I continued to be awkward I would die of a cardiomyopathy. In the end we got a second opinion from the consultant and he said that I wouldn't die and I shouldn't take such a high does of the drug. When I went back to the specialists in London they said that the higher does could have been fatal. It's not all bad having ASD.)


So, the things that I do about this:

For eye contact during resusitation - I explain it to them and ask if there is a place on the ceiling I can look which is not near anyone's eyes. That way I can keep them open without the stress of eye contact.

There is nothing I can do about noise in A&E and the Resus room but if they were to put up squares of noise absorbing foam in various places around the ceiling it would massively help the accoustics and make it a more relaxing place for staff and patients.

In GP surgeries, having an alternative quiet waiting area where there are fewer people and no music would be very helpful indeed. Sometimes the noise and people in the waiting room bring me to tears before I even get to see the doctor.

I have been dealing with the contradictions in several ways. First I have to accept that not everyone remembers everything they say and when they recall things they often get things a bit wrong, even doctors. ALso I have to remember that I process language very literally and specifically but others don't so when I think they've got it wrong it might be a disparity between my language processing and theirs. Also telling each doctor that I have mild autism and process things very literally helps too, as does checking and rechecking that I have understood what they're telling me. This makes communication better and avoids meltdowns.

Hope this helps!