Skip to main content

Nathan Puckeridge from NSW shares his thoughts about having a sibling with cystic fibrosis

Nathan-puckerage

Nathan Puckeridge is 27 years old and is a CF sibling. His twin sister with cystic fibrosis. He lives on the central coast in NSW with his wife and two dogs. He is an intensive care paramedic with NSW Ambulance and he loves his career. This is his story.

The challenges of having a sibling with cystic fibrosis

As a sibling, it can be challenging at times knowing that your loved one, best friend and sister is experiencing a disease that is ongoing and will always require treatment. It is difficult to know how you can help, because it’s all you want to do. Although I am a twin, I don’t have cystic fibrosis and I often ask myself why it was my sister and not me who was diagnosed with it. These thoughts for me are constant and ongoing, and they do take a toll over time.

The ongoing medical highs and lows throughout the illness have a significant impact. It’s like being on a rollercoaster with your sibling and all you can do is offer your support throughout the whole journey. The worry of losing your sibling is always there and is a forever reminder of the short time WE ALL have.

The impact on mental wellbeing

Research indicates that siblings of people who suffer from chronic illnesses can feel invisible and guilty for being the ‘healthy’ child.

Definitely, during some of my sister’s harder times, it is very much a thought of mine that you want to go through the hard times for them and give them a break. It doesn’t always feel fair that she has to go through this and not me.

I don’t feel invisible as I travel this journey with my sister closely and have always been there to support her through clinic appointments, hospital visits, and those times we needed to reflect and talk things out.

Supporting my sister through this illness has been one of the most rewarding and comforting things I have ever done. You may not experience the symptoms or have to undergo the ordeal of ongoing treatment, but you do sit beside them and witness everything. My understanding of the disease, its ramifications and dynamics have only been reinforced by my consistent support of my sister and because of this, I feel a sense of comfort about her condition.

I think that siblings of people with CF are definitely vulnerable to mental health issues. I believe in a strong mind set and being active, setting goals, achieving goals, and allowing this condition to be one of your strengths and not one of your weaknesses.

The stronger your own mental health is, the more support you can offer your sibling.

Communicating with friends and peers

I feel that your friends, peers and other loved ones may not ever get to understand the extent of this illness. I have tried explaining this condition and its ongoing ramifications, with no one ever really understanding it. Your peers may be supportive, and this is all you can ask of them.

Some things in life you have to experience to really know what it is all about. For the population not experiencing a chronic disease, it is hard to really fathom what it’s like day to day to be living with one.

Don’t judge these peers for not understanding. They will almost always automatically avoid a negative or challenging thought, because they want to provide hope and optimism.

My sister, family and I often hear “She’s back in hospital again, what happened?”. This question often can be wearing as it shows a lack of knowledge about CF. My sister would, at times, have up to five hospital admissions per year for two weeks at a time. People avoid these challenging realities and remove them from memory, and therefore ask this same question each admission. You can only really understand how relentless a chronic disease like CF is when you are experiencing it yourself.

Cystic fibrosis can generate resilience

This disease has created incredible resilience in me. It made me very mature at a young age and didn’t sugar-coat the realities of life. This resulted in me finding my true identity sooner and helped me to strive for my own personal goals. My perspective on life is to live every moment to its fullest. Sometimes I go a bit too far with this and my brain goes into overdrive, but it’s the best perspective to have, because it has enabled me to achieve so many goals I could never have dreamed of ten years ago.

I find that I cope with hard times and difficult situations far more easily than the general population because of the resilience I have learnt to build up. The resilience comes from closeness with your sibling and the experiences you have with them during the whole journey.

It’s unbelievable what this illness has actually offered my sister and me. Because of the nature of CF and our true understanding of life’s limitations, we have both been able to appreciate how quick life can be. This has led to us both being very determined people. We don’t have time to feel sorry for ourselves because we know there is so much to do with this life.

This doesn’t mean you can’t have a bad day and feel down. The resilience that CF teaches you is the main ingredient for your determination. Never give up and seek support when you need it. I know I have many times.

As a paramedic, I am able to share this greater perspective on life with my patients, who are often also going through a hard time. Because of the nature of my work, I understand my patients’ perspectives because I have experienced the effects of CF as a sibling my whole life.

I can offer a lot more insight and support to my patients, which makes my job even more enjoyable. The support, care and compassion you show to your sibling throughout this journey will be returned to you in spades, with life experience, maturity, perspective on life, empathy, compassion and satisfaction.

Experiencing CF as a sibling definitely engages feelings of compassion and empathy. What’s even better is that because you are so experienced at these feelings, you know when they need to be applied and when it’s time to give someone space. These ‘experienced’ feelings turn to ‘experienced’ actions and can be applied to everyone in your life.

Lessons learned

Engage with your sibling and be a part of their journey. You will learn a lot from this disease and it’s definitely not all doom and gloom. I believe it actually makes you a better person.

When times are tough, engage the full support of everyone who is of the same understanding about CF as you, because their support will strengthen you and your strength will support your sibling.

The experiences I have shared with my sister throughout this ongoing condition have been amazing. We are the closest siblings I know because of all this. Without the regular appointments, hospital admissions, train trips, bus trips and car trips, I wouldn’t have found the unique bond I have with my sister, who is one of my best friends.

Most of all, life is short. Make the most of it and never give up!

To here more from a CF sibling, check out Anna’s story.

If you would like to share your story, please contact us at [email protected]. We’d love to hear from you and so would our readers.

This story was published in February, 2021.