Updated: Oct 24
Welcome back to our series "Letters to my younger self".
If you could, what would you tell a younger you? What advice would you give? What tips could a younger you use to deal with the struggles you know are coming?
In this series, RARE Youth Revolution are reaching to some of the slightly older members of our community who know what it is like to grow up with a rare disease. By writing letters to their younger selves, we hope that they can offer some advice and guidance that benefits all young people with rare diseases.
This entry comes from Charlotte Conn! Charlotte is impacted by Huntington's disease.
This is Charlotte's LETTER TO MY YOUNGER SELF!
12 years old—you’re just starting Year 8? I know how much you love school, a chance to switch off from your reality and just be 12. You’re still friends with lots of people that provide that relief for you all these years later.
You’ve been through so much already in your short life, but I guess you know that—people constantly tell you you’re mature for your age. It sounds like a good thing doesn’t it? I know, you know, it’s not always positive. The maturity has to come from somewhere.
Mum and dad have just told you about your risk of Huntington’s Disease (HD) haven’t they? I guess your ‘maturity’ means they thought this was the right time. Please be assured, in time it definitely was, albeit very confusing for you now. I know you haven’t told anyone and you won’t for a few years, but that’s okay, you’ve got to do whatever feels right for you. I know it feels like you’re the only 12 year old. in the world dealing with this.
‘You’re so strong’ people tell you, as you call an ambulance for mum on a seemingly normal Monday morning before school. Ignore your classmates who are inquisitive as to why you’re late for school—only you know how hard it is. Your experiences to date have taught you so much. You know there’s no time to panic in those situations, you have to be pragmatic and sensible, yet empathetic and caring. I know it’s a lot to carry on your day as if nothing has happened, but you do it so well. That ability to keep going will only get more important as you get older.
I know you’re watching Nan’s symptoms get much worse, I’m so sorry. I know how much you care for her, she’s been your rock through a lot of turbulent times and
watching the woman you love slowly fade away is a pain nobody can really put into words. You’re doing AMAZING and although HD continues on its destructive path, you’re her lifeline, her person. She relies on you to make her laugh, to pull her out of crying episodes of 7+ hours and to encourage her to carry on when she doesn’t have anything left in her. You’re learning cues for what she needs and when, and one day your knowledge will save her life on countless occasions.
Unfortunately, you’ve just tested positive for the HD gene, meaning you will one day be the same as mum and nan. It’s a pretty hard pill to swallow. You’ve seen so much of HD already, but please, I beg of you, live for today. There’s so much that has happened that we never planned for, so you never know what’s around the corner. You’re going to meet some pretty special people as part of an incredible community. You’re going to use all your experiences now, as a young person impacted by HD to help others. They’re going to change your life—you won’t feel alone anymore, like the only person in the world who has to deal with HD. You’ll no longer be in your head with your worries, you can actually speak to people who understand.
I know the disease is making your relationship with mum a little hard right now, but please remember, this isn’t her talking, it’s HD. She loves you so much and you’re going to be best friends. She needs you like nan does and I know you don’t mind that. In fact, you love looking after them— it’s your purpose in life.
You’re into cooking aren’t you? Learning that skill at such a young age to help out has become something you’re passionate about. You’ve always been a foodie! Cleaning, something you’re doing for nan after school too? Again, you doing that to help has turned you into a crazy, Mrs. Hinch cleaning lady. Quite funny really. I know you do lots to keep yourself busy, that’s still your way of coping even now! Football? Charlie, you get to watch Sunderland be promoted at Wembley! Keep going to those games with dad, they’re his release too from everything HD brings.
You might not realise it but you’re grieving for them both now. Let my words validate your grief because through years of anticipatory grief—in your experience, that will be more painful than the grief of the physical loss. Nan is no longer here with us, but you feel a sense of peace, after watching her suffer so much for so long.
Yes, I know you’re thinking ‘how can things be good, me and mum have HD too?’ Just trust me, your diagnosis doesn’t stop you.
Everything you’re doing now, looking after nan and being there for mum, it’s made you so resilient. You will climb Kilimanjaro, travel to some amazing countries and smash out a degree, all whilst visiting nan 4/5 times a week.
It’s not all sunshine and rainbows, not even close. The journey is almost unbearable at times but that’s okay. You will worry about your future, you’ll blast your music and cry every time you leave nan in her final years but just know, that’s okay. You’ve got to do what you need to, to get by.
You’re going to meet some people over the next few years that don’t belong in your life, that don’t give HD the compassion it needs, but hold on because you meet your best friend and I’m writing to you this 2 weeks after being engaged to him! He’s so patient and kind, and he will reassure you even though the future looks seemingly terrifying, he’ll be there every step of the way. We’ve even talked about your wishes when you one day become symptomatic, not the average conversations in your 20s. Peg feeding systems, DNRs, care at home, communication aids—you’re still a planner and I guess your plan for HD is no different.
I guess my message to you is, life is worth living and life is beautiful, even with HD. Being a young carer can take its toll but if you constantly think ‘how can I be happy when HD takes so much away from me’, you’ll never be happy. Happiness is so much more than everything being perfect, it’s about finding joy in the imperfections. Smash it kid, you’ve absolutely got this!