I am Maisy, I am 26 and I have a rare disease. The chances are, if you are reading this, you might do as well. Although, I am quite a bit rarer even than those who have ACC, that’s about 1 in a million, I also have a rare genetic condition called Neurofibromatosis type 1.
I was diagnosed with ACC on October 10th, 2023, and it feels like my whole life has been turned upside down since. I’ve had to give up work for now, I can’t engage with my hobbies as I used and I generally, feel like a different person to the person I was this time last year. Some of this is temporary, I will go back to work when I am ready and I will start to get back into doing the things I love, but I know now things will never be the same again.
I had an open adrenalectomy at the end of October, and shortly after started on Mitotane. Processing the diagnosis surgery and treatment has been immensely hard both physically and emotionally. I perhaps, quite naively thought I would be back to my usual activities a couple of short weeks after surgery. When I wasn’t, I was being so hard on myself, blaming myself for not healing quickly enough, for not healing well enough. Before starting Mitotane in December I was terrified, my only experience of chemo was two years of IV chemo as a kid and I was so scared of ging through all of that again.
I was overwhelmed by the new list of medication that I now had to take, morning noon and night, my day was now punctuated by medication, my week by hospital appointments and my life, and the lives of those around me by this rare disease, because when you have an illness, that is so all consuming it impacts every person and part of your life. My family, friends and partner have been amazing, but have also been put on this rollercoaster with me, and they too have no choice.
There is no quick fix, no one thing will make it all better. The whole thing is unfair, it’s horrible and feeling every feeling, sometimes in the space of an hour is not unexpected. It can however feel like a very lonely place. It’s no quick fix but one thing that’s helped me has been the ACC Support UK Facebook Group, a space where no question is a silly question, and everyone understands the point you are at in your own journey has felt like a weight has been lifted.
For me this was of enormous benefit before starting Mitotane when I had so many questions and worries that I did not want a clinical answer to. The group members were incredible, all offering support, but also first-hand experiences of what life is like day to day on Mitotane. Sometimes, clinical answers are helpful, but sometimes all you need is the true stories of people living this reality day to day. That’s what the group has given me. Each person who has shared insight, answered or asked a question, have in some way impacted my journey in a profound way.
My family, friends and partner have been amazing, but have also been put on this rollercoaster with me, and they too have no choice.
I like to see each step on this journey as a chapter, that I can get to the end of and leave behind, only revisiting the ones I want to. When you are thrown into a situation with such little control, try to take control where you can, do what you need to do, but most of all don’t do it alone.
I’m grateful to AMEND and ACC Support UK for the information, support and resources they have provided since my diagnosis, and I am really looking forward to the face to face meet up, where I won’t be such a rare statistic.
