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I grew up being told my appearance ‘disgusted’ people. I want the bullies to see how far I’ve come

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It has been three decades since Bethany finished her school years, but she recalls the torment from bullies like it was yesterday.

Bethany grew up with thousands of coffee-coloured lumps covering her face and body, and was constantly bullied for her appearance.

Diagnosed with the incurable genetic disorder Neurofibromatosis Type 1 (NF1) at age two, the Sydneysider was at one stage taunted with the description “fish face”.

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Among other barbs were “You disgust me” and even “You’ll never get a boyfriend”.

But she found love – twice – and has come a long way from the schoolyard tyrants.

“I would love for the bullies to see how far I’ve come,” Bethany, now 44, tells 7Life.

Bethany counts herself lucky after falling in love for the second time. Credit: Supplied

Growing up in the western Sydney suburb of Blacktown, Bethany was no stranger to the local hospital.

Most of the time, her condition – which presents in thousands of lumps and bumps all over her body – had no serious medical consequences.

Occasionally the spots would grow in uncomfortable places, like between her fingers or on the soles of her feet, and she would have them burnt or cut off.

However, underneath her skin is where the real problems lie.

Sometimes the lumps would turn into benign tumours and grow inside her body, impacting her skeletal structure, muscles and nerves.

And Bethany would need to undergo major surgery to remove the tumours and prevent serious harm.

With the potential for tumours to pop up anywhere – from her brain, lungs and heart – constant screening is necessary to ensure they are caught and removed quickly.

Bethany was bullied for her differences.
Bethany was bullied for her differences. Credit: Supplied

This means Bethany goes under the knife at least once a year.

“I have had my surgeon for about 15 years,” she says.

“When I am under the anesthetic they like to take as many lumps off as possible.”

It’s hard to be different.

As a young child, living with the condition was difficult.

“My parents changed my schools when the bullying was really bad,” she says.

“Teachers didn’t understand my condition either.

“It’s hard to be different.”

But the uprooting of her education didn’t help – with the bullies continuing to follow her.

“I remember this one boy calling me fish face,” Bethany says.

The staring and teasing continued into her teen years and eventually she left school in year 11, unable to cope with the constant hate.

Her feelings of loneliness grew and she believed she would never find someone to love her for her “bumps”.

First love

Then Bethany met Paul. He didn’t stare or do a double take, and Bethany was instantly drawn to him.

Paul was living with thyroid cancer and initially didn’t want a romantic relationship.

“He told me he didn’t know how long he had left,” Bethany says.

“But I just told him, ‘Great, because I don’t know how long I have left either’.”

The woman hopes the bullies can see just how far she has come.
The woman hopes the bullies can see just how far she has come. Credit: Supplied

The pair started dating and in 2004 they wed.

Paul encouraged his wife to reach for the stars and helped her strive towards her goal of working in childcare.

Devastatingly for Bethany, after a decade-long battle with cancer, Paul died.

With the support of family and friends, Bethany pushed on and continued her childcare dreams.

Second time lucky

Then in 2017, she was introduced to Greg through a mutual friend.

A massive fan of sci-fi series Doctor Who, Greg would encourage Bethany to watch the show with him.

“For the first six to 12 months I just fell asleep in every episode – they were so boring,” she says.

“He would then rewind them so I didn’t miss anything.

“Eventually I watched it and now I am a huge Doctor Who fan.”

Bethany can’t wait to wear her engagement ring
Bethany can’t wait to wear her engagement ring Credit: Renee Funnell/Supplied

Their shared loved for the show brought them together and the pair quickly started dating.

Along with her assistance toy poodle Lulu and Greg’s Jack Russell Beau, the new family moved in together.

“I’m so blessed for a second chance,” Bethany says.

“Like Paul, Greg never sees me as my lumps and was incredibly supportive, caring and funny.

“We saved each other.”

Bethany recently went down on one knee and proposed to Greg – and he said yes.

They are planning a Doctor Who themed wedding in September 2023, with Lulu and Beau being ‘flower dogs’.

“I found love twice. I think that’s pretty lucky considering I didn’t think I wouldn’t find it once,” Bethany says.

Bethany hasn’t yet been able to show off her diamond ring – with a large lump growing on her engagement finger, it hasn’t been able to slide over her knuckle.

Bethany as a child and now.
Bethany as a child and now. Credit: Supplied

So at the beginning of May, her surgeon removed more than 20 lumps from her body including the one on her finger.

It’s still healing but Bethany is hopeful she will be able to wear the diamond soon.

Good and bad days

Lulu is a big support for Bethany when she is having a bad day.

“She helps me get out of bed sometimes,” she says.

But through everything, she cannot thank Greg, her family and friends enough for the love and support they continue to provide her.

Bethany and Greg plan to wed in September next year.
Bethany and Greg plan to wed in September next year. Credit: Supplied

“When you are feeling alone there is always plenty of others who will stand up for you,” she says.

And when it comes to revisiting the bullies, Bethany says she “doesn’t think about them any more”.

For more information of NF awareness month visit the Children’s Tumour Foundation.

Source: 7News