by Sarah Boobyer, guest blogger
Sarah Boobyer works in the recruitment team of a busy charity called Dimensions and this is her story about invisible disability, shared today as part of Incendo’s activities to mark International Day of People with Disabilities.
I will always remember the moment I decided to become a journalist. Aged 13, I had just survived Meningitis Meningococcal and Septicaemia and I wanted my second chance at life to mean something, to live my dream. It was not an easy journey. The school career advisor suggested other more “realistic” choices. My parents thought I should get any job on leaving school, but I persevered and became the first person from my family to go to university. I worked all the hours I could to fund my education and in 2001 I graduated, secured an interview for a trainee journalist on my local newspaper, and I was successful.
I loved my job and for the next five years I lived my dream of becoming a fully qualified journalist. I covered and wrote about court cases, local Government meetings, attended major police and fire incidents, reported people’s good and sad news. I ran media and fundraising campaigns. I attended 10 Downing Street as part of a campaign to save an important employer in our area, I interviewed D-Day veterans from Somerset and helped Barbara Clark, an NHS nurse, to win her fight for the life-saving breast cancer drug, Herceptin. I received a national journalism award for Barbara’s story and she included me in her biography, ‘The Fight of My Life.’ I was promoted to Senior Journalist and often deputised for the News Editor, leading the news team, and deciding which story was making the front page.
But overnight everything changed for me. From nowhere I noticed noises I couldn’tt explain, buzzing and whistling in my ears, keeping me awake at night; I worried I was going mad. At work I thought my phone wasn’t working, I kept asking my colleagues to repeat themselves and I had to keep checking my work; I started to avoid going to court cases and meetings as I was so worried I would record things incorrectly. I saw all the doctors at my surgery and they thought it was stress. So, I took a holiday but it didn’t work. In the end I was so exhausted from not being able to sleep and struggling at work, I quit and walked out of my job at the newspaper. I felt so heartbroken and too ashamed to let everyone know what was really going on.
It was Christmas, I had no money and bills to pay so I got myself a temporary job stacking shelves in the fruit and vegetable section at a local supermarket. I found keeping busy really helped me. My festive colleagues were amazing and put a smile on my face with their cheeky comments like, “Sarah, what do you think of my lovely pair of melons?”. I was so grateful for that job.
My health got worse, I had panic attacks and dizziness, on top of the constant noises in my ears which plagued me 24/7. One afternoon my boyfriend (now my amazing husband) took me to A & E and begged them to help. They referred me for tests and to an Ear Nose and Throat specialist who knew straight away what was wrong with me. He said: “You’re going deaf, you have got Otosclerosis and Tinnitus in both ears, not much we can do, go next door to be fitted with hearing aids and we will book in physiotherapy”.
I had hoped my problem would be fixed. I was so clueless about it all and had never heard about Tinnitus or Otosclerosis. I opted for the smallest in-the-ear hearing aids simply because I didn’t want anyone to know I had to wear them.
In time, I gradually accepted my situation. I had physiotherapy, I went back to the ENT who refitted me with stronger over-the-ear hearing aids – and I went through habituation where your brain adjusts to Tinnitus so you can have days/periods when it is easier to live with. I spent time reading and understanding both conditions, so I knew what I was dealing with. Now, I can’t remember my life of being able to hear or to have peace and quiet. Even on my wedding day I made sure I had new batteries in my hearing aids and my Tinnitus whistled and roared as I walked down the aisle.
Hearing aids have helped me to keep working and I am so grateful for them. Since my diagnosis I completed teacher training and a child I supported signed to me: “You’re beautiful”. He had never had a deaf trainee teacher before. I also worked for years as a mentor on projects helping hundreds of people with disabilities to find employment. We shared those tough obstacles as they overcame huge barriers and prejudices to find a way of working that was right for them.
My hearing loss has progressed further. I now work from home answering phone calls and doing admin for a charity thanks to help from Access to Work, which has provided equipment and subtitles to enable me to keep working. I doubt any of the callers realise I am deaf and that makes me smile.
Sadly, I have met ignorant people along the way. One critic told me: “I’m not being funny, but I wouldn’t want someone like you to teach my kids”. Or the manager who started to recruit to replace me when I had asked for reasonable adjustments at work. Or when I’m shopping in the supermarket and impatient people are rude to me because I do not hear them. My husband tells me about them after we leave the shop and what he said to them…!
That’s the thing about disability. It’s a bit like oxygen or electric – you know about it, but you cannot always see it. – Sarah Boobyer
Someone said to me once: “But you don’t look deaf?”. Honestly, what is deaf meant to look like?! We all need to re-evaluate our thinking. Next time someone hasn’t heard you or is taking a little longer than you would like, just give them consideration. Disability is not always visible and is not an exclusive club – I joined it aged 26 and it changed my life overnight.
Did you know?
1 in 7 adults in the UK has persistent Tinnitus. People who are affected by Tinnitus worry that they will never experience peace and quiet again. There is no cure but there are lots of support groups and charities, one of them being Tinnitus UK, which provides lots of helpful advice and support: www.tinnitus.org.uk
Did you know?
Otosclerosis is the most common cause of hearing loss in younger adults and causes the bones inside the inner ear to fuse together, stopping you being able to hear. If you think your hearing is getting worse, see a GP and ask for a hearing test. For more information: www.nhs.uk/conditions/otosclerosis/
Did you know?
Access to Work can help you get or stay in work if you have a physical or mental health condition or disability. The support you get will depend on your needs but can provide a grant to help pay for practical support with your work, or support with managing mental health at work or money to pay for communication support at job interviews. For more information: www.gov.uk/access-to-work
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