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Hello. Need some help please

Chromo15mum

Hello. I'm new here and will introduce myself on the new here thread too. I'm after some advice please.

I recently visited my GP to discuss my concerns. I have been diagnosed with a 15q chromosome deletion.  Lots of people with a microdeletion don't know they have one and it never effects them. I only know because my children got tested because they have lots of medical needs and adhd and autism diagnosis. They have the same deletion as me. I went to the GP because I know I am autistic. I have always known. But as a female I was good at coping and hiding it. My mum had 2 other children. One boy who was extremely violent and had meltdowns and violent episodes a lot and my sister who had mental health problems around food and self image. I wasnt forgotten but I was the quiet one who just managed.

Anyway, long story short, I wanted to discuss with the GP the chromosome results and getting some support. I was brushed off basically and told adult services are stretched to their limit and I've always coped fine until now so what's the problem? 

I kind of agreed. The dr said I can identify as autistic and tell those I want to tell I am, and that there is no need for me to go through the lengthy process of a diagnosis.

Except now i have to go into hospital. I need to have my gallbladder out. I'm terrified. I have always been unable to cope with medical procedures, people, nurses, needles and being left alone without my husband or my mum. I have had 4 children but I was never left alone. I was always with my mum or husband. I never had to cope alone. I have a needle phobia. It's a genuine phobia and I have a meltdown everytime. I cant help it. I've tried everything to cope and i cant. Normally i have my mum or husband to help me through. But with my gallbladder i cant. My husband will be at work and my mum doesn't drive. Plus when you have a baby you're expected to have someone with you. I will not be allowed to have anyone with me as i am a fully grown woman having a routine operation. 

I mean things like when i am sat in the ward and another person walks in with medication, I start to panic. Even if it's not for me. I cannot cope with this. Even typing I'm stressing.

My problem is I have no diagnosis. Nothing to tell people I cant cope. My GP is not at all willing to discuss this with me.

What can I do?

  • Thank you all. Hopefully I've replied to this thread correctly. 

    Due to the whole medical/people/phobia problem, visiting the GP again anytime soon might be an issue. I've got the dr this week with my neuro typical son to discuss possible genetic testing for him, plus I also need to take my 10 year old to the GP for a second opinion on some very worrying leg bruising. I've also got a consultation coming up with a surgeon re the gallbladder operation. That is so overwhelming I cant even type it without feeling very unwell. I feel trying to get another Dr visit in there any at point this month possibly will tip me over the edge.

    Is it ok to tell other medical people about my own thoughts on my autism? As in would I get treated like a neurotic nut if I told the surgical team that I am scared and autistic. I feel they would think I'm lying.

    I know a lot of this is all just me being me and that actually people would most likely understand my worries. I guess because for so many years we, as a family, have been treated very badly by professionals who didn't believe us about our children. At one point (and still occasionally now) we get accused of fabricating our sons autism. I worry that people will think I'm completely nutters.

    The medical passport looks like a great idea. Again I assume I can use this without a diagnosis?  I don't know why I so hung up on having the diagnosis? I guess it's because the school system and family members never believed us until the drs agreed that our sons were autistic, maybe I'm worried the same will happen for me?

    Thank you for your help everyone. X

  • Hi There, you have a right to get an autism diagnosis. See this link for guidance on how to get a diagnosis:

    https://www.autism.org.uk/about/diagnosis/adults.aspx

    I would suggest making an appointment to see a different GP and before you go do the online AQ and EQ tests and go armed with the results along with a couple of pages of A4 of symptoms that cause you difficulty. 

    Good luck!

  • Whether you have a diagnosis or not, how you feel is very real and should be acknowledged by any healthcare professional. I work in a hospital and patients often confide their fears to me. As a ward we always try to accommodate individual needs and to put people at ease. If you have fears and concerns then try arranging a visit to the theatres and the ward before your operation. Talk to the professional involved about your needs and explain what will help you. If this feels daunting, try  writing them a letter. Ask them what they can do to help you. If you go in to this armed with information it should feel a lot less frightening.