Lisa lives with mitochondrial disease-related hearing loss, a common symptom of mito that affects between 50 and 80% of all those with the condition. To help raise awareness as part of Deaf Awareness Week 2022, Lisa has very kindly shared her story, discussing how her progressive hearing loss has impacted upon her daily life, the additional impact on her daughter, and her inspiring resilience to live the best life she can.
When did your story start?
I was in my later twenties when I started to realise that I wasn’t hearing as I should. I put this down to the busy environment in which I worked and didn’t really think much of it. Then people started to make comments, often hurtful ones, and this really upset me. It was after overhearing a friend explain to another- that I wasn’t ignorant, I just hadn’t heard her, that I went to see my GP.
Within no time I was referred to the hearing clinic and prescribed hearing aids. This came as a real shock, and I remember feeling quite embarrassed about it all and couldn’t face having to wear them. I decided to struggle on without. A few years later I finally took the step to embark on something I longed to do and pursued a career in counselling. I passed 2 degrees in succession, created my own business and felt so lucky to have my dream job.
What impact did this have on your life?
As time went on it became more apparent to me that my work was disguising my hearing loss. After previously having worked in an office environment for 20 years, I was now working totally alone and seeing people on a one-to-one basis. Without realising it, I’d become cut off from the outside world. I had started to wear my hearing aids, and whilst I was ok hearing when I was one to one with someone, step into a setting with background noise, open spaces, other people… I was at a total loss!
By this point I had been watching the TV with subtitles for some years and was now totally dependant on them. I’d given up with the radio when I’d reached my mid-thirties as unless there was a song I recognised, I could not make out the words from anything new- music just became ‘noise’. Outings with friends became less and less and my world which had once been full, with options, opportunities and endless events in the diary, now that world had shrunk to quite a lonely existence. Someone had once commented that I was so sociable that I would go to the opening of an envelope, suddenly I wouldn’t even go out to post an envelope!
When were you diagnosed with mito?
Seven years ago, at 44 years of age I became very unwell. I suffered from ataxia to the point where I struggled to walk, had issues with my balance and slurred speech. I also had extreme fatigue to the point where I was stuck in bed for a week or two. After a couple of years of investigations, I was diagnosed with mitochondrial disease (mito). I lost so much. My dream career came to an end, the loss in earnings had a massive impact and I nearly lost my home. I lost the sense of who I was and where I was going. But so much more than anything else, I almost lost my daughter as I was struggling to care for her. My hearing (which I found out is one of the most frequent symptoms of mito), has progressively worsened. I have also developed diabetes and am now on insulin.
Did you have support with your hearing loss?
As I write this my daughter turns 15 today and I owe the fact that I am back on track and living the best life I can to her. From an early age she recognised that I wasn’t hearing people when we were out shopping, in meetings at school or attending health appointments etc. She picked up on m?y upset of having to apologise 6 times as I’d heard something wrong or constantly apologising to others because I couldn’t hear what they were saying. She would save me from endless embarrassing situations. She would order in restaurants, go through what had been said at parent’s evenings as I’d nodded throughout pretending I’d understood, she would nudge me in the waiting room when I’d been called to go through. The list became endless. When I do embarrassing things because I have not understood correctly, we can laugh together now whereas previously I’d have cried in secret.
How do people react when you tell them about your hearing loss?
Ellie has encouraged me to speak out and tell people that I’m deaf and the response has been very different from what I expected. People do understand and do care. My hearing has totally gone now and without my hearing aids my world is silent. I’ve flooded bathrooms and kitchens when I’ve not heard that I didn’t turn the tap off properly. I’ve nearly been knocked down when I hadn’t heard a car behind me. I could write a comedy sketch and it would be my reality! My hearing loss costs me a fortune with all the mistakes I make and messes I get into.
I have now been back working for a few years after Ellie pushed me outside of what had become my ‘comfort zone’ and my colleagues have been amazing. They work with my hearing loss and focus on my strengths in other areas. I feel valued in my work again and have a sense of purpose. I have had to buy myself some more hearing aids as the ones I had had become inadequate. These were very costly but weighed up against the impact on my hearing have been more than worth it. I can now use my phone to make and receive calls which I hadn’t been able to do for some years.
Do you have concerns for the future?
I have without a doubt really struggled with my hearing loss journey and I know this will continue throughout my life. The hearing aids I have do help much more, but I still struggle when I’m around other people and if there is background noise – they will pick that up and drown any speech. I need to be directly facing the person speaking to me as I rely mainly on lip reading. I’m not confident enough to go places alone, I will go with Ellie, my partner Nigel or a trusted friend. However, my greatest struggle is knowing that because this is part of my Mito disease (my mother and grandmother were both deaf), then Ellie will also suffer with this. I just pray that she can give herself the strength she has shown and given me in dealing with it all and live a full life.
– Lisa. Mito Patient.