Chronic illness at playtime

Sarah Richardson talks about what it was like being diagnosed with tinnitus as a child.

About three years after I was first diagnosed with tinnitus, I joined a Facebook help group. The name of the group escapes me, but I remember it was primarily populated by tinnitus sufferers from the United States and their relatives. It was a place to share thoughts, feelings and information related to suffering, living and growing with tinnitus, and it gave people the means to seek reassurance from others in the same boat. 

Unfortunately, it quickly got swamped in junk articles and fake cures, so I didn’t stay for very long. 

Before the group became a dumping ground for spam, I was fairly active in it. Very early on in my membership, I decided to share that I’d made the decision to celebrate my tinnitus’s birthday. I wrote a post about how I was planning on popping a bottle of champagne open with the family and getting in a very decent Victoria Sponge to mark the occasion in style. 

Delicious. And why not? Positivity moves things along. 

I also disclosed my age. At the time I was eighteen and a half years young. 

During the week after I posted this message I didn’t get a single negative response to my unorthodox birthday plans but I received many, many, many messages from complete strangers, from parents who had joined the group because their child had tinnitus, all wanting to know how. 

How could I be so positive about having tinnitus while still also being so young? 

What tricks and tips could I give them that could help their offspring? 

Was the miracle cure for tinnitus found deep in the Amazon Rainforest as they’d always suspected? 

Feeling failed by modern medicine 

Suddenly I was drowning in caring — and in some cases overbearing — mothers and fathers who were at the end of their tethers trying to help their children, feeling failed by modern medicine, not knowing where to turn. I tried to help as best as I could — never before have I wished so much that I had some secret miracle cure to pass on — but it made me realise that tinnitus in children and young people is far more common and widespread than I could’ve ever imagined. 

I don’t think I’m wrong in saying that the leading cause for tinnitus is hearing loss, which in turn is associated with ageing. Almost every doctor I saw in the early days, be it at the General Practitioner level or specialised ENT, was surprised that I had tinnitus. “You’re a bit young for that,” they’d say in the same way someone might tell you you’re a little young to be drinking or smoking. Naughty, naughty! 

I’ve spoken on the radio about my tinnitus in the past and the conversation almost always revolved around my age. It’s seen as an ‘alternative’ or ‘fresh’ perspective — about how it’s unusual to hear from someone living with tinnitus who doesn’t have the weight of fifty or sixty years of life behind them, from somebody who’s just getting started at the grand old game of life. 

I felt like my symptoms were taken less than seriously 

Because of my age, there were times when I felt like my symptoms were taken less than seriously in the doctor’s office. Of course, they didn’t say so outright, but I knew certain individuals thought I was exaggerating. After all, according to their ‘experience’, tinnitus shouldn’t happen when you’re just bouncing out of school, it should happen in harmony with the bells of your judgement day. “Exam stress” they said, “hormones” they said, “normal symptoms of a cold” they said — as if I wasn’t an intelligent young person who could tell the difference between the normal and the abnormal. 

Who knows my body better than me? 

Don’t get me wrong, I encountered very few people on my tinnitus journey who had this poor attitude, but it’s never in anyone’s best interests to diminish the voice of children just because they’re young. Invalidation is a form of violence, and it can have deadly consequences. I often wonder what would’ve become of me if Mum and Dad hadn’t believed me from the start, hadn’t fought to get me the healthcare I deserved. I’m definitely one of the lucky ones. 

To young tinnitus sufferers I say this: you’re valid, your opinions on your body are valid, and you deserve to be taken seriously.