Published on 12, July, 2020
Hey I'm Rain!
I was diagnosed a few years ago when I was still at school. Life has changed so much since, sadly I lost my mum and sister in the space of a few years - massive change, my worst nightmare really and I still find it hard to live after this happened. But I'm trying.
I had some bad news last year, I have a brain tumour and I'm having a melt/shutdown every time I go to hospital appointments as I have severe anxiety and medical phobia. If you guys have any tips on how to be better with this that would be great. Currently I don't cope well and it's embarrassing.
Writing is my world. It's so much fun, I love it. I like to do creative writing and can do it literally all day. I've been collecting records as well and enjoying a new way of music. I like music, it's fun that There's so many songs to hear and enjoy.
Welcome home Rain.
I'm so sorry about your health. Totally understand your health phobia, I have the same don't trust doctors and avoid them all cost. Agree with others, like they just got their qualifications online.
Although it's forbidden knowledge, non-mainstream, (and also in many countries illegal), I happen to know that there is a world wide illegal and unmonitored public trial of "Rick Simpson oil" currently underway. Failures are being publicised as well as success stories
I've seen the stuff work with my own eyes, and had it documented by a reliable witness, so I feel justified in mentioning it to someone in your position. There's a video entitled "running from the cure"
A three month course of RSO from the bits off the internet where surprisingly I never go, costs around £2-3000 I am told.
In my opinion the stuff needs proper trialling NOW, and would likely cut the cost of cancer care dramatically as well as improve results equally dramatically for some sorts of tumour. It seems to be good on the fast growing sort, in my observation, but I only have a tiny dataset to draw on.
Welcome home, Rain.
I know all about bereavement and grief, having experienced so much personal grief.
Welcome Rain
I'm happy you can see the bright side
I have medical phobia too, and I don't trust them on top of it, and GPs these days are so incompetent it makes me think their dad or mum just bought their qualifications
Hi Rain, I'm so sorry you are going through this.
I can't imagine how awful it must be, but the medical phobia part I empathise with as the same happens to me in medical situations, albeit I've never yet had to go through it with something of that order.
Interestingly, there was another thread on this forum the other day about medical phobias. So many of us have them. It's not a phobia like other phobias because we can't just deal with by avoidance and it's cause isn't the same. It's all in the sensory system. And it's real, not imagined.
I hope your doctors understand how your reactions are rooted in your autism and are helping to minimise the stressors for you. Have you got someone who can go with you to the appointments and advocate/ communicate for you?
If you haven't and haven't already thought of them, there are a few things that could help. There are advocacy agencies who can provide that. The Mind helpdesk or PALS can tell you who covers your area. You could write a medical passport listing all the triggers and all the things that help and ask the admin to put that on your notes and carry a copy with you. I also have a dog tag in case I ever get knocked over or some thing and can't verbalize what the problem is. It just says 'Dawn: I am autistic. Medical anxiety: may shut/melt down'
Hi rain,
I am so sorry about your mum and sister. do you have any other family?
can they remove the tumour? is there anything that the hospital could do to help reduce the stress of the appointments. no need to be embarrased, you are doing amazing! you have severe anxiety and a medical phobia and yet you still manage to go to your hospital appointments
what do you write? i write poems when things get tough but they are pretty awful
Alisha xx
P.S. feel free to send me a private message