Sera is a 26-year-old Hip Hop girl from Bassendean; cool, vibrant and insightful. She also has cystic fibrosis (CF). In this interview, she shares some of her story and thoughts around being a teenager living with CF.
What was it like for you as a teenager?
It was hard, because I didn’t want to feel different. I didn’t really want to bring my medications or nebuliser to school and I didn’t have many sleep overs because I didn’t want to do nebs in front of people. No one really ‘got it’. I was known as the “sick girl”. I sort of guarded myself because of the fear of being excluded. I felt like it was hard to keep up with friends.
People were OK with it, it was more my burden.
Were you compliant with taking your medications and keeping up with your treatments?
Adherence was a bit of an issue. It stopped being such an issue when I was around 21 years old. I got my first real partner and he was supportive, so I settled down and did my treatment. I also “came out” at this time about having CF, doing my first charity event with a DJ to raise awareness about CF.
How did your siblings deal with your CF?
My siblings had always been extremely supportive when I was growing up. It wasn’t so much that I got extra attention, it was that my CF got attention. It was hard for my sisters to see the difference. I’m still really close with them. Some of my siblings chose to be tested to see if they were CF carriers and some didn’t.
My sister-in-law Rhonda has been a huge support with my awareness raising events. She helped me plan my first event in 2012 and has helped me establish my annual fundraising event Hip Hope for Roses. I couldn’t have done it without her and the help and support of my family.
Did you know anyone else with CF?
No, I never really knew anyone else.
I became friendly with other people with CF in hospital but never knew anyone outside of hospital with CF. I now have heaps of people with CF on my social media for support. Since ‘coming out’ about having CF, and being able to talk openly about my illness, a lot of people have said to me they have known or do know people with CF. Awareness helps.
Was there anything else that would have helped when you were a teenager?
Teenagers just rebel. Maybe trying to find an active hobby or activity that they really enjoy. Learn to multi-task when doing nebs e.g. I do my nebs when I’m straightening my hair or listening to music etc.
Would it have helped to have talked to someone else?
I think at any age it helps. To see someone else doing nebs would have been great, and to know I wasn’t alone with this. I would have liked to talk to an older person; someone to reframe things from their own experience.
What would you say now as a mature lady of 26?
Don’t sweat the small stuff. I’m not a complainer; I try to stay positive and get the best out of life.
You’re either going to feel down about it, or accept what you have. If you can accept it, you become happier and realise most drama is insignificant. We deal with so much. No matter how weak we may feel, we are strong!
Have you at times struggled with mental health? And if so, what things have you done to work through it?
At least once a year I get a bit down because my health changes so much. Things constantly change and then you get used to it again. Speaking to people and keeping a good social network is important to me and really helps. I like to meet new people and get excited about things.
Having people around you that are OK about CF is really important, but mostly I think it was about accepting that I’m OK, accepting that I have CF, and having no shame about that. I continue to be healthy and try to stay on top of my treatments. If low in mood it’s easy to stop treatments, so it’s really important to get back on top of it.
I also put myself ‘out there’. I like to create awareness, so lots of people know about CF and support it. The more you talk about it, the more support you have. Everyone with CF is their own support network, and it’s easier now with social media.
I also have a very loving and supportive partner. He makes me want to be healthy. I need to keep up with all the fun and exciting things he has planned for me and our future. He’s ticking off my bucket list. He is so supportive, which is so important and fulfilling.
What are your future plans?
I would love to become a wife and mother; I’m only human. I would love to travel and experience everything. Becoming a makeup artist is my dream.
Article from RED Magazine, Edition 3 2017.