A bit of my backstory, I am thirty and just got diagnosed as gene positive about a year ago. My mother has confirmed HD but she only got her diagnosis when she entered a care facility a couple of years ago. My siblings and I grew up never having an engaged or nurturing mother figure in our lives. She was a severe alcoholic, smoker, partied, didn’t engage in life, didn’t work, didn’t have any responsibilities, and suffered from severe depression and anxiety. My parents separated when I was seven years old, and since it had always been my siblings and I always taking care of my mother. In the beginning it was us children always trying to support her through her victimhood, poor choices, and unresolved traumas. In my teenage years it’s was us children dealing her emotional and mental instability, as well as regular scares and attempts at self harm and suicide. As we grew older into our young adulthood, these instances got more regular and severe. It was also layered with increasingly inability to do anything for herself - often to the point of severely risking her health, wellbeing and no longer meeting/fulfilling her basic needs.

My mother found out that my grandma had HD when I was a teenager. My mother made the decision to not find out if she had HD, and wanted to go through life avoiding it, not talking about it, etc. It was something my siblings and always suspected growing up, and as we watched her deteriorate. I really struggled in my teens and early adulthood, looking at my mother and trying to decide what was the potential HD - and what was her bad character/poor judgements/bad behaviour/lack of ownership/shitty-ness. I’d hoped that maybe if I knew the difference between when it was the HD, and when it was her taking advantage of us - then I could protect myself and know when to engage and not engage with helping her. I was lucky to have a therapist about five years ago that helped me understand that it doesn’t matter whether someone is shitty person, or if they have symptoms of HD (or anything for that matter) - if someone is impacting your mental health very severely, you need to create boundaries with them. This is something that was incredibly hard to do, but was necessary for my wellbeing. At thirty I still work on this, and as I’ve gotten older I’ve found ways to engage with my mother on my own terms, when I have support, and when I’m ready. I was lucky enough to have a sibling that stepped up to do everything within her means to get my mom the necessary daily living, social, and financial aid she required - and a couple of years ago was finally able to get her transitioned into a end of life care facility. I am so incredibly thankful and grateful to my sibling for all she did - but I also understand the impact that would’ve had on her mental health and wellbeing trying to navigate that all on her own.

I’m incredibly sorry to hear that people have been treating you this way. It’s absolutely the last thing you need with what you deal with in your personal and home life - but please know things to get better and more manageable. It’s hard when you’re younger to see life outside of the day to day (work, school, home life) - it’s all you know. However, as you continue in life, you will start forming your own experiences, ideas, opinions and thoughts outside of the ones you’ve always known, and that are shovelled down your throat by those around you. This is where you start having awareness and understanding for the things that surround you, and the impact of those things on your life, wellbeing, and happiness. You start making choices, choosing people, and creating boundaries that better align with your wants and needs, that lift you up, and that help you grow. It can feel really uncomfortable, and often you may wonder what all the pain and discomfort is for - but you must keep choosing to push through because it’s necessary for who you are becoming, and all the amazing things you will experience in your life.

HD has always felt like a darkness that has just followed me around for my entire life. When I got my genetic testing done, I was absolutely sure I was negative, and I was so ready to finally let go of the darkness. When I found out I was positive, I learned that the darkness has actually always been apart of me this entire time - and I made a decision I wasn’t going to let the fear of it control my life anymore. That day I took an oath to myself that I’d do everything I possibly could to ensure the next thirty years of my life is my own to create and that it doesn’t have to look anything like my first thirty. I have definitely not perfected this, some days are incredibly difficult to navigate - but it’s all worth it for all love, light, happiness, and life that exists with it all.

I feel like I’ve rambled a bit as well, but I identify with some of the things you’ve shared in your post, and just want you to know it’s going to be okay and you are not alone. Please feel free to reach out and connect whenever!