I’m really struggling at the moment and wanted to be honest about where I’m at.
I lost my uncle recently to Huntington’s disease, and that grief feels raw and heavy. But alongside that, my mum also has Huntington’s, so I’m carrying grief for someone I’ve lost and anticipatory grief for someone I’m slowly losing. It feels like grief that doesn’t end, it just layers.
I’m exhausted from always being the one who looks after others, who stays strong, who copes. Right now I don’t feel strong. I feel sad, low, and overwhelmed. Some days I find myself wondering what the point of it all is, not because I don’t love my life or the people in it, but because everything feels so heavy to carry.
Seeing everyone around me moving forward, having children, living lives that feel out of reach for me, adds another layer of sadness that I’m still trying to make sense of.
I’m sharing this because I don’t want to pretend I’m okay when I’m not. I’m trying to reach out, to be honest, and to find support rather than holding it all inside.
If you’ve read this, thank you. It means more than you know.
Overwhelm is real and you recognize that. Can you help yourself with a meditation to slow down the reactions even one minute or a 10 minute nap can help me slow this down to my capacity. Other people’s lives are not a mirror of yours. You are on your own path and this part of it we walk together.
I was hospitalized for trauma and there techniques of breathing and calming that my psychiatric nurses taught for self soothing. Not chanting on a hilltop all fluffy but real verified methods of breath work and nervous regulation that are immediate quick and effective. There apps also that address this need.
Does your mum have carers? if not you could contact social services and try to arrange something. Huntington’s Disease is a horrible illness. I saw it many years ago when I was a student nurse. You will definitely need help. Are there any other family members who can contribute. I’m pretty sure there’s a support organisation in the UK.
I’m so sorry for the loss of your uncle and your mum’s illness, @Ninjanikki. It’s completely understandable that everything feels so heavy right now. You’re coping with so much.
As @Norma1 says, it sounds like you could use some extra support. It might help to talk to people who’ve been where you are, too. The Huntington’s Disease Association (https://www.hda.org.uk) have a helpline on 0151 3315444. They also have local and national support groups.
You might also want to check out Let’s Talk About Loss. They run peer-led groups for 18 - 35 year olds. You can find your local group on their website:
I’m so sorry you are going through all this. Reaching out and asking for help is a massive step, so hopefully you will get some sense of emotional relief from that. I know they don’t operate everywhere, but I get a lot of support from a charity called Carers Together and would definitely recommend checking them out. If not them, there might be something similar in your area. I hope so.
Take care x
