Health medical fears

Dawn said:

private home phlebotomist

Wow, I had no idea that was a thing! I would consider this, especially if they would do it outside in the garden so no covid risk! Although our phlebotomy dept is not so bad, especially now it is appt only. Back when it was just turn up the wait would be about half an hour and really stressful for the phobic. I am making a note for next year, also my Dad might prefer it. Thanks!

Thanks for your great suggestions.

Regards: [link removed by mod]

Fear of doctors/hospitals affects quite a few people, but passing out and being sick might mean its too much anxiety, an anxiety attack.   Autistic people can struggle to manage thoughts and feelings and then get overloaded by whats happening, and either shutdown or meltdown.

Doctors can only go by what they observe and what you say, and might just see bad behaviour so important to work on managing yourself better.  You are going to have to think about what is going in your mind generally and when triggered by things like doctors/hospitals and let them know it all, write it down so that you don't forget when talking about it, or hand it over if its easier.

Best thing is to work on feeling ok about going to doctors/hospitals, you don't have to like it but you can just accept its best just to go and get it done, then feel good afterwards that its out the way.  

Send a document back to your GP and ask for anti-anxiety medication at reception next time you must go as it's sheer terror. They've issued a command, and have complete control to see their expectations through. 

Blimey. You have my empathy and if only that could save you the distress.

In a way you comfort me by disclosing this. I ended up with a medical phobia so bad, complete with melt down/shut down that I ended up misdiagnosed with a personality disorder and dismissed by services. I thought I was the only one on the planet to experience this, until I realised I was autistic.

But it IS a feature of your autism and you cannot control how your sensory system works in there. The unsympathetic reaction of doctors will only serve to fuel your anxiety and make it worse.

There is a way to help you. Your sensory system will always be your sensory system and you can't change that. Nor can you avoid stimming, melt down, shut down or whatever other autistic reaction you have when overloaded. However, understanding of all that and a sympathetic response from general medical practitioners would give you more positive experiences. The more positive experiences you get, the more your anxiety will lower.

General medical are under pressure to be fair and just want to shove patient's through quickly without taking the time to understand and treat you appropriately.

There are things that can help you be listened to. Ask for an autism informed advocate for anything planned. These are free and independant of the NHS.

Get a medical "passport". It's a document that should flag on their systems (though you may also need to carry a copy) explaining that you are autistic and in medical situations may have certain unintended reactions and that you never intend to "disrupt". Try and list as many triggers as you can and the stuff you feel helps you. I've got a clinical psychologist writing one for me, but you could compose one yourself. Approach your GP and learning disability nurse to help you get these on the computer systems.

I would also respond to that letter with the same, saying you do not intend to disrupt anything, but your autism means that accessing your health care is difficult and you would welcome a conversation about appropriate "reasonable adjustments" to try to minimise the chances of that happening for their sake and yours. And legally they MUST provide any such "reasonable adjustments" as they can to make this easier for you.

Your GP could also have hospital and Ambulance system flagged with an alert for autism and medical anxiety. Mine has done that. That way they should know in an emergency situation. I also invested in a sliver dog tag. It reads: "Dawn:I am autistic" on one side and "medical anxiety. May shut/melt down" on the other - just in case I'm ever knocked over by a bus.

When they wrote that letter they assumed that was bad behaviour you had conscious control over. It isn't, but you need to get them on board to help you and give them and easier day.

For blood tests, try a home phlebotomist. It's the only way I can get through them. Basically, GP gives you blood form, call private home phlebotomists (cost is only about £10-15), they come to you. No being wound up by sitting in a waiting room for hours triggering all your senses, they grab your bloods and whizz them to the labs. Mine is really experienced with autism. A lot of parent's of autistic kids use her because it's just too traumatic to take the kids to the hospital for them.

Good luck.