I’m Alice. As I write this, I’m 28 years old and live in Melbourne with my husband.
In my early twenties I completed a half marathon and Tough Mudder. Until recently, I worked full time and completed a Masters of Human Rights via distance part time. I was career driven and looking forward to the normal challenges of life to come.
In 2014 and early 2015, I had two bouts of pain throughout my body. Originally it felt like I had pain around my joints, then it spread to my muscles. I gave myself the alter ego, Agnes, an elderly woman who was angry from the pain. After a month or so, these bouts ended and the doctors thought it was a virus.
In late 2015, the pain came back, this time throughout my entire body and just never went away. I was fatigued, weak and the pain was everywhere. I was referred to a rheumatologist who, after many tests, thought it was fibromyalgia, but referred me to a neurologist just to be sure.
In mid-2016, my neurologist completed a muscle biopsy, which I affectionately referred to as “Stabby Stabby Day” and a month later it was “Diagnosis Day”, where I had friends and family bet on what my diagnosis would be. To my surprise, I was diagnosed with mitochondrial disease. In the meeting with the neurologist, I was so happy to hear that it wasn’t “all in my head”; I was smiling. That was until I came to the realisation that there is no cure or treatment – mitochondrial disease is for life.
You spend a lot of time booking appointments to have tests done, as well as seeing specialists. It requires annual checks of all organs. I take pain killers and the ‘mito cocktail’ of vitamins every day. It redefines relationships with colleagues, family and friends. Learning to ask for help on a different level, for things I could do and should be able to do at this age, is very frustrating. Like most people with mito, I don’t look sick to the unknowing eye.
Planning for the future is difficult. We’ve made the decision to wait until the results of the whole genomic sequencing (genetic test) are back (which can take three to six months) and may or may not tell us anything, before considering having children.
I’ve learnt that it takes time to research this complex illness. With so many different types, a newly discovered illness in many aspects, making your way through articles and slowly understanding more than a lot of medical professionals do, becomes the norm. My family and I have ended up handing out the Mito Foundation GP Handbook to help bridge the gap. Grieving for what you once were, as an adult patient, is a really important process.
My approach to dealing with my diagnosis is to constantly research, assist with promoting mitochondrial donation and start ‘Mito Merch’. I wanted to find clothing that would raise awareness about mito but all the products on the market emphasised the theme of “hope”, which I found depressing. Most products were for parents of kids with mito. So my designer friend, Luka and I created ‘Mito Merch’ to raise awareness of mito through humour and use it as a way to raise money for the Mito Foundation.
My story is so similar to other adults with mitochondrial disease. I’m learning, now, to accept my diagnosis and find a way to live with the future in a new way. I’m lucky that I have a desk job and my work allows me to work from home and do part-time hours. I try to appreciate the small things, like beautiful sunrises and the little wins.
Accepting that you can’t do what you used to is really important; pushing yourself just makes symptoms worse. I hope for the best but prepare for the worst. There’s no real way of knowing what will come next with mito. The work of the Mito Foundation, supporting patients, connecting people who are going through what you are, advocating for the mito community, and funding research for treatments and ultimately a cure, is crucial and gives me hope.
Alice Gibson, June 2017