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Old 07-01-16, 12:08 AM   #1
Ashyrose7
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Join Date: Nov 2015
Posts: 29
Default Appointment 2

I had my second appointment today, and it did not go well.

The counsillor is very patronising and I can't stand her. She asks me the same questions over and over again, and she talks to me as if I'm 12 not 22. I wish she'd speak to me the same way she'd speak to a 40 year old, and she's still trying to change my mind.

For any of you who don't know my situation. I'm currently wanting to be tested for HD because my maternal grandmother had it. She passed away in 2012. My Mum got very upset after her Mum passed away and said if she knew there was HD in the family she would never have had children because she wouldn't be able to cope with passing it down (if she has passed it down)
It's taken me three years to come to the decision to finally be tested. The counsillor seems to want to change my mind on the count that I'm a bit young at the moment and there's no rush, and the fact that if they test me and find out I have inherited the gene change then that means my Mum had HD too, and she does not wish to know.
I have been thinking about this for a really long time, and I think knowing would be easier so I can mentally prepare myself for Mum getting it if the result is positive for me, and I can prepare my family too, at least one of us will know what's going on rather than be in the dark about it.
I do see my mum regularly but I am good at keeping secrets from her, as I said I've been thinking about being tested for three years and am on my second appointment and haven't said anything to her.

My argument is that whether I'm tested now or in five years I'll still be in the same situation because my mum isn't likely to change her mind about knowing.

However, after a fair bit of arguing with the woman, she finally accepted that I wasn't going to change my mind and has made me an appointment to see the psychiatrist in February.
Then another appointment to have the test..
So, by the end of March I could know whether I have it or not

If you were in my situation regarding my Mum what would you do? Would you talk to her? Or not?

Ashy x
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Old 07-01-16, 01:33 AM   #2
Melody
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Join Date: Jun 2014
Location: South East
Posts: 339
Default Re: Appointment 2

Quote:
Originally Posted by Ashyrose7 View Post
I had my second appointment today, and it did not go well.

The counsillor is very patronising and I can't stand her. She asks me the same questions over and over again, and she talks to me as if I'm 12 not 22. I wish she'd speak to me the same way she'd speak to a 40 year old, and she's still trying to change my mind.

For any of you who don't know my situation. I'm currently wanting to be tested for HD because my maternal grandmother had it. She passed away in 2012. My Mum got very upset after her Mum passed away and said if she knew there was HD in the family she would never have had children because she wouldn't be able to cope with passing it down (if she has passed it down)
It's taken me three years to come to the decision to finally be tested. The counsillor seems to want to change my mind on the count that I'm a bit young at the moment and there's no rush, and the fact that if they test me and find out I have inherited the gene change then that means my Mum had HD too, and she does not wish to know.
I have been thinking about this for a really long time, and I think knowing would be easier so I can mentally prepare myself for Mum getting it if the result is positive for me, and I can prepare my family too, at least one of us will know what's going on rather than be in the dark about it.
I do see my mum regularly but I am good at keeping secrets from her, as I said I've been thinking about being tested for three years and am on my second appointment and haven't said anything to her.

My argument is that whether I'm tested now or in five years I'll still be in the same situation because my mum isn't likely to change her mind about knowing.

However, after a fair bit of arguing with the woman, she finally accepted that I wasn't going to change my mind and has made me an appointment to see the psychiatrist in February.
Then another appointment to have the test..
So, by the end of March I could know whether I have it or not

If you were in my situation regarding my Mum what would you do? Would you talk to her? Or not?

Ashy x
Hi Ashy,

I am so sorry that you haven't bonded with the counsellor, it makes the testing process that much more difficult.

I went with one of my children (younger than you) and whilst it was pointed out, you are young, why now etc they accepted everything that was said in answer.. The test went ahead and I thank God it was negative... My child could not live with not knowing so it was the right thing to do ... If the coin had landed on the positive side I really don't know how it would have been handled.

Re your Mum.... I would suggest just saying 'If I decided to test would you want to know the resukt, whichever way it goes, bearing in mind that could divulge your status too, or would you rather not know? Otherwise, just say nothing to anyone and continue yourself... Not easy not having a support group around you though.

I so feel for you, same age as my children, I know the dilemmas, just do what is right for you.

Take care x
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Old 07-01-16, 08:33 AM   #3
banda
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Join Date: Apr 2014
Location: Consett, County Durham
Posts: 448
Default Re: Appointment 2

You have to do what feels right for you and you should go ahead with the testing if that is what you want. While having secrets is not the norm the occasional secret/white lie that is not going to cause any harm is fine in my mind. However I think I would always try to be open with family and friends about such things.
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Old 07-01-16, 04:49 PM   #4
Crystal
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Join Date: Sep 2015
Posts: 212
Default Re: Appointment 2

Hi Ashyrose - I really do believe you must do what you feel is best for you. You are having counselling, so that is good. Others will do what is best for them. I know and I understand how difficult it is because of your Mum not wanting to know. Talk to her again if you can, but ultimately it is your decision alone to make for yourself. Best wishes
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Old 07-01-16, 07:43 PM   #5
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 331
Default Re: Appointment 2

What a very hard situation just getting it straight in my head your mum does not want to know has not had counselling and not had test and I assuming is symptom free? ..but you are having counselling and can have test.
Is the counsellor concerned about you coping with the knowledge and not being able to share it I wonder .
Talking to you mum may be the best way forward but it also may mean you have to be prepared for her to be upset . Having the test will hold a big responsibility as you will know your mums fate when she dosen't can you cope with that?
Have you spoken to your SHDA ? have their others that may have been in this situation so you can speak to them to see how it turned out .

Really would not like advise you what to do really really hard decision only you know what is right for you
very good luck to you

Take care x
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Old 11-01-16, 10:03 PM   #6
Ashyrose7
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Join Date: Nov 2015
Posts: 29
Default Re: Appointment 2

Yes, my Mum doesn't want to know and hasn't had a test, she is currently symptom free, if she has it she will start showing symptoms within the next ten years.
That is exactly what my counsellor is worried about
Talking to my mum is simply not an option, it is my mums decision on whether she wants to know and who am I to deny her that.
I think I will be okay, if she does have it I can prepare myself to support her and my family when she gets it rather than be in the dark like we were with my grandmother.

Whats a SHDA?
Thank you x


Quote:
Originally Posted by Gabby View Post
What a very hard situation just getting it straight in my head your mum does not want to know has not had counselling and not had test and I assuming is symptom free? ..but you are having counselling and can have test.
Is the counsellor concerned about you coping with the knowledge and not being able to share it I wonder .
Talking to you mum may be the best way forward but it also may mean you have to be prepared for her to be upset . Having the test will hold a big responsibility as you will know your mums fate when she dosen't can you cope with that?
Have you spoken to your SHDA ? have their others that may have been in this situation so you can speak to them to see how it turned out .

Really would not like advise you what to do really really hard decision only you know what is right for you
very good luck to you

Take care x
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Old 11-01-16, 10:19 PM   #7
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 331
Default Re: Appointment 2

Quote:
Originally Posted by Ashyrose7 View Post
Yes, my Mum doesn't want to know and hasn't had a test, she is currently symptom free, if she has it she will start showing symptoms within the next ten years.
That is exactly what my counsellor is worried about
Talking to my mum is simply not an option, it is my mums decision on whether she wants to know and who am I to deny her that.
I think I will be okay, if she does have it I can prepare myself to support her and my family when she gets it rather than be in the dark like we were with my grandmother.

Whats a SHDA?
Thank you x

Ok sorry to ask how old is your mum?
SHDA is a Specialist Huntington's Disease Advisor you can ring the office to find which one covers your area .
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Old 12-01-16, 03:51 PM   #8
Ashyrose7
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Join Date: Nov 2015
Posts: 29
Default Re: Appointment 2

She is 49. She will be 50 this year.
Oh I will have to find out who my one is. I don't like speaking on the phone though could I email them?
Thank you
x

Quote:
Originally Posted by Gabby View Post
Ok sorry to ask how old is your mum?
SHDA is a Specialist Huntington's Disease Advisor you can ring the office to find which one covers your area .
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