Love and Roses.

Last week was Sixty-Five Roses Week which aims to raise funds to support the genetic condition Cystic Fibrosis (CF). Obviously, this is something that is very close to my heart (or rather lungs), but each year when it rolls around there is something that really frustrates me.





CF is somewhat of a silent illness. Although most people would recognise the name, few can identify what it actually is and for the most part those living with CF do not reflect the image of a ‘sick’ person. In my opinion for all the wonderful work they do CF Australia doesn’t really focus on educating the public about what CF can really mean and chooses to often focus on the lighter less shocking aspects of CF for its publicity campaigns. The truth is, everybody’s CF journey is different. There can be vast disparities in the way this disease affects each and every person but by focussing on the brighter stories I think it fails to acknowledge the fight that so many CF’ers and those around them face every day. I think the image of CF week fails to acknowledge the real CF.

It took a long time for me to feel comfortable acknowledging to people other than my closest friends and family that I have CF. I guess I feared being treated differently or being pitied. Being able to hide my CF is both a blessing and a curse. People are always telling me “You don’t look sick”. I can be up all night coughing or ready for a hospital admission and still have people not understand. While sometimes I really appreciate being able to hide behind some blush and mascara, sometimes it makes it really hard. Sometimes people really don’t get it.

While sometimes it is important to see the positive perspective CF week takes, it also doesn’t go very far to help promote awareness. It doesn’t help people understand the hospital visits or the invasive treatments. It doesn’t show people the early morning and late night hours spent doing treatments just to breathe. It dosen’t depict the hundreds of pills each month or the side effects some of them have. It doesn’t educate people about the endless complications that can be associated with CF – digestive issues, cardiac problems, liver disease, diabetes, osteoporosis, depression… or inform people that CF patients can’t share their challenges with other patients face-to-face because of cross infection. And it doesn’t acknowledge that adults, teenagers and children still loose their battle with this illness every week. Investing in research is vital for the future but the truth of the present is important to improve the relatively low-level of services available to CF patients.

For me, telling the stories of those whose journeys aren’t so cheery is an important part of CF awareness. Stories like that of Coen Ashton, the young jet skier who rode the Murray River to raise CF and organ donation awareness and whom at the age of thirteen requires a double lung transplant. Or Aaron a local CF fighter and dedicated nurse who at twenty-nine passed away after failing to receive a second lung transplant. It doesn’t tell the stories of twenty-five year-old Eva or 7 year-old Connor or the many other CF journeys I have shared (and cried over) as part of the online community. Failing to tell stories like these overlooks the battle these amazing and courageous individuals fought so hard, but couldn’t win.

When these stories are overlooked, we also forget some other very special people. The ones, that despite the challenges and heartache, give us love, support and never give up hope. In the past five years Cameron has learnt just how hard this fight can be. He has held my hand (and not fainted) during every single procedure. He has slept on hard chairs in hospital rooms for nights on end. He has smiled at grumpy steroid crazed Jess. He has fought with doctors, nurses and pharmacists to ensure I receive the best care possible. He has seen and loved me on days that are covered in spew, snot and slime- all part of CF. Cameron has never once complained.

At twenty-four it is sometimes tough to face an uncertain future. One where he may not get to grow old with his future bride. Cameron is my rock. He is so strong. Every time we get over another hurdle together our love grows stronger and we are reminded to live for the here and now. How lucky am I to have found someone as special as Cameron to love and who loves me back. For that I am so grateful.

So for me, it is important that Sixty-Five roses week isn’t just about hope. It is also about raising awareness of the fight. About remembering those, who despite it all, never ever gave up and about acknowledging those who show us the strength of their love every single day.