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A strong support system can have a positive impact on your life. It’s something Amanda, a 28-year-old with CF from Queensland, feels has made a difference to her life. For CFStrong, she discusses this difference plus why asking for help makes you strong. 

“As I was growing up, I kind of found that the reason why I got through the hospital admissions or got through the bad days was purely that support system. I have an amazing one. I have some amazing people in my life,” Amanda told CFStrong.  

“Growing up, my Mum and my Dad both worked full time, worked very hard to make sure that my health was top priority. 

“And when my Mum and Dad weren’t there, my Nan and my Pa jumped in. My Nan would do my physio twice a day, she would make sure I’m taking my medication, made sure I was out on the trampoline, making sure that I was just doing all the right things to keep healthy.  

“And then I have my brother who’s two years older, he is an absolute rock for me. He was there, he understood, he wanted to know, he wanted to learn. He knew when I wasn’t doing the right thing, he’d try and cover it up. But then he’d always give it away. He doesn’t have much of a poker face.  

Amanda says as she has gotten older, her support system has expanded beyond family to include friends and her partner.  

“So, I’ve got my best friend Ashley, who came into my life when I was in grade eight.  

“We met at an AFL carnival. I was umpiring, so was she and that just hit off an amazing friendship. And she just wanted to know everything. She wanted to learn. She wanted to come to the hospital. She wanted to know the ins and the outs and what does CF mean, what does it entail?  

“That was unreal. To have somebody who’s just met you, but they want to know everything, and she was absolutely a crucial part in what has happened in my life in the last probably 13 to 14 years definitely.  

“I have a beautiful partner Megan who has come into my life in the last couple of years, who has stepped into a world that she knew nothing about but has absolutely gone headfirst into it. She is at every appointment. She’s by my side when I’m not well, she makes sure I take my medication, I’m getting out and being active and making sure if I’m having a bad day mentally or I’m having a bad day physically, she’s making sure that I’m okay. She’s there for me.  

“She truly helped me open up about how I truly felt and maybe something I didn’t realise that I [had] probably been hiding in my sexuality. And she was 100% supportive, helping me get through that process and understanding it and learning it and understanding myself. 

“That’s been a massive adjustment in my life, I think, to just have somebody who cares and wants to be next to you. I’ve always had Ash and I’ve always had my family, but having a partner that wants to be involved, wants to learn everything. That’s something that I’ve never had before. So, she’s a special one, that’s for sure. 

“Having that support network that is non-judgmental, wants to be part of you, wants to learn is massive.”  

“Having those people around you to really show you that yeah, you’ve got this, but it’s not you. It’s not who you are. It’s what you have. But it’s not who you are. That for me has always been a very powerful thing and I’ve always said that it’s, I have CF, but it’s not who I am.” 

While she appreciates how important her support network has been, Amanda says what’s been important for her too is learning to ask for help. After the death of a close friend, someone she’d grown up with and who also had CF, Amanda says she found herself in a “deep spiral”.   

“I am okay to speak about it, because I’m proud of where I’ve come from, but… I went into a very deep spiral when he passed away, and to the point where I’m not proud of the things I did.  

“And during that period, it wasn’t easy for me. I didn’t talk to anyone. You could see my health was declining. I struggled a lot. I had a six-year relationship breakdown over it. Because I was just going home, going to work, going home, going to work. I didn’t want to talk to anyone. I didn’t want to know anything.” 

While her family and friends offered their support, Amanda says it ended up being her clinic team that stepped in, and in doing so reassured her that it was ok to not be ok.  

“I ended up going into hospital for two weeks and [my doctor] said he wasn’t going to let me out until I spoke to someone. So, five days passed, and I finally cracked. And I spoke to one of the team.  

“And it was a bit of a lengthy process, it took me about a year, a year and a half to sort of come out of that very deep, dark place of I don’t deserve to be here, to really come out and be like, that’s not what they would want.  

“That’s not what our friends would want that have passed. They want us to live a life and be great and do all these things.  

“I was in a bad place… And to come out the other end was just like a light in the tunnel.” 

For Amanda, recognising that it’s ok to not be ok was an important part of pulling herself out of that spiral.  

“I think it’s understanding that that help is there.  

“The help is there. But you’ve got to ask, and you don’t look weak, you don’t look sick, if you ask for it. You actually look strong. 

“I find myself so proud of myself when I have put up my hand and say, ‘Hey, I need help’. That’s something that I struggle with, I still do. But I’m proud when I do it.” 

Hear more from Amanda on the CFStrong podcast!

In this episode of the CFStrong podcast we hear from Amanda about her experience living with CF. Amanda discusses what she is most proud of, the importance of the CF community and the challenges of losing friends with CF. She talks about the value of being ok with not being ok and why you should ask for help when you need it.

This is the second episode of our two-episode chat with Amanda.

This story was published in July 2022. If you would like to share your story, please contact us at admin@cfcc.org.au. We’d love to hear from you and so would our readers.