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Huntington's Disease Youth Organization

Does anyone else get irritated and angry dealing with HD?

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Q. “I’m 19 years old and My mom was diagnosed with huntingtons when i was in elementary school, she is in the middle stages now, but seems to be doing well on her trial medicines and tests. I have 2 sisters and I feel like I am so hostile towards my mom all of the time. I stay in my room and almost everything she does, irritates me. I don’t like feeling this way, but i can’t help it. Does anyone else get this way? Is it normal to get irritated with her blaming the disease for her accidents… When i still know that that’s the truth? Maybe it’s denial on my part, but my sisters are not like that. I feel like i can’t accept it for what it is, so i am always irritated around my mom, which is not fair at any cost. Another question i have involves med school, i want to go to med school, but i feel like i can’t just go anywhere i want to, just knowing my mom has so little time left to be functional, i feel like it’s limiting me because i don’t want to be far away and miss what time i have, what do I do?” Sarah

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A. Dear Sarah,

Many thanks for getting in touch. I’m glad you felt you could write to us with your questions and I’m glad to hear your mom is doing well on her trial medicines and tests, that’s good news.

As for the questions you ask…

Yes Sarah other people do feel this way, and some react by staying away from their parent and keeping themselves to themselves e.g. in their room or going out all the time. It is also very normal for young people to feel angry and irritated with a loved one who has Huntington’s disease, even when you know it is probably the disease causing someone’s irritating behaviour e.g. bumping into things, spilling things, having a short temper.

It might help to read about other young people’s feelings so that you can see that you are not the only one, have you looked at the feeling embarrassed section on HDYO?

You say that it might be denial, but it doesn’t sound like that to me Sarah. HD is a very hard illness to understand, as I’m sure you know - even the ‘experts’ don’t know or understand everything. And please don’t blame yourself for these feelings, you can’t help it, but there are things I think you can do. For example, it can help to learn more about the illness so that you can try to figure out what is likely to be HD (or not). I hope the information on our site helps, and if you have more questions please just ask.

You also say that your sisters aren’t like that and this may be true, but we all react in different ways and have different ways of coping with things. So please don’t beat yourself up about the fact that they handle things differently, this is also perfectly normal, although it may make you feel guilty if you see them behaving differently from you.

You probably do this already Sarah but sometimes the smallest of gestures can make the biggest of differences to a mum. You will probably still get irritated and may not spend as much time with your mom as you think you should but you can do little things e.g. buy her flowers, make her a cup of tea, take some photos, send her a text - and other things she likes that only you and your family know.

You also say that you feel like you can’t accept HD for what it is and that you are always irritated around your mom. The first thing I’d say that as human beings we always seem to take out our worst feelings on the ones we love the most, and your mom will know this, mums do. On a more serious note Sarah, if you think these feelings are too much it might help to speak to a counsellor, or someone in your local HD support group. And don’t be embarrassed if you want/need to ask for this kind of help, it is what they’re there for!

The second question you have is about med school and leaving home. Again, it is normal to have mixed feelings about how far you should go from home and to worry about the time you might have left together with your mom. It is understandable that you don’t want to be far from home and that this could be limiting for you.

This is a really difficult decision and I can only tell you about the young people I know and what they have done in similar situations.

Some young people choose to go where they want, even if it means being far from home. You say that your mum is in the mid stages so she may be functional for a good while yet. You could choose to follow your dreams but visit regularly and keep in touch. And as time goes by you would always be monitoring the situation, if you move away you can be safe in the knowledge that you could always move back.

You could also choose a med school closer to home, other young people I know have done this, but they have often been doing a lot of caring and it just hasn’t felt right to move too far.

I wonder if you have talked to your mom or your sisters about your worries, and where you should go to med school and your/their future plans? It might help to know their views too… Ultimately though it is your decision, and you can always change your mind.

Karen Keenan

Hi Sarah,

Just to add you may find sharing your feelings on the HDYO forum really useful and you may possibly meet other young people feeling the same way there.

Matt