am very missunderstood!

[salamander160]

Hi, I had my encephalitis in 1975, all through my life I have found that having an abi and other health problems makes it difficult to fit in to any one kind of group, I am constantly finding that the general public, the carers who care for me, doctors and nurses, lots and lots of people really have no idea how to work with somebody with an abi, Where I live, it is supported living, we have a new care coordinator, she and I had a meeting the other week, we were discussing my disabilities and abi, I asked her if she knows anything about encephalitis, or abi's, she said know, I said it'll make my life easier if people would understand me, she said to me she'll have to look it up! You can't just look it up, it is a vast area, do you guys have this kind of experience and find people as dismissive of your abi as I do, I don't understand my brain injury, the professionals don't so how can somebody just look it up? it is really frustrating especially when you have to battle all the time.

[HungryHufflepuff]

I have a tbi and I find people, doctors and nurses, don't understand that either. It makes life more of a struggle than it need be. Where I used to live, I don't know that the doctor understood it, but was very supportive and I had various support. Since I moved here, there seems to be no understanding or interest in it. The only response about it at all has been: everyone gets headaches. It almost feels like my medical records weren't transferred and the doctor thinks in making things up. In the eight years I've lived here I haven't had a blood test though I was anaemic and had prescribed iron. Now I just buy the strongest iron I can get without a prescription. That's just one example. Which is talking about me, not about you. But it's to illustrate the fact they're not interested in knowing about our health conditions. This is not a very encouraging reply! I feel I should be trying to uplift you, not depress you. But it is a struggle to be understood or heeded. Sending you lots of good wishes again.

[salamander160 in reply to HungryHufflepuff]

Hi ya hungryhufflepuff, I like it, quite amusing! I am glad I am not the only one who feels like that, my gp is a really nice guy, very supportive and has helped me a lot but that's as far as it goes, it doesn't make it easy for any of us, the encephalitis society and headway of course have an up hill struggle to promote awareness of our conditions, it really isn't easy. And don't worry about telling me about yourself, that is ok, that's the idea of these communities, to share problems and try and help one another, as it is hard for us to get support from the medical services we have to try and help one another.

It is sad that you yourself have to struggle so much, I don't know where you are but try a different doctors surgery, I am going to change shortly. Good luck.

[HungryHufflepuff in reply to salamander160]

Thank you, and good luck to you too.