What I Wish I Knew When I Was Diagnosed With Cystic Fibrosis
– By Aoife Rafter
I was actually diagnosed quite late in life with CF, at the age of 9. Up until this point, I was told that I had severe asthma. But once my two younger sisters came along, my Mum knew something was up so we investigated further. Finally, on the tragic day of 9/11 2001, I was diagnosed with Cystic Fibrosis.
As I approach the 21st year of my ‘diagnosis anniversary, I reflect on all I’ve learned, overcome, and struggled with over these years. Let me share these vulnerable reflections with you all.
1. Research is the way forward
Over the years, my family and I have organised many fundraisers in aid of CF, always ensuring a large portion of the funds go toward research. This was mainly my Mum’s idea, and as usual, she was on it with this one. I have grown up in a vastly changing time in the CF world. The power of science through research has been God-like, with a cure now so close to our fingertips. This is an emotional one for me though as I’ve lost so many friends and acquaintances to this disease in Ireland.
So many parents go through a CF diagnosis with their child each year with fear and panic running through their nervous systems. But what an incredibly exciting time it is in the CF world. We’ve seen so many incredible genetic therapy medications come available and prove successful for the majority of our community. I’ve seen a complete baby boom in my female CF friends too since they started Kaftrio in particular. It’s truly incredible stuff and all impossible without the power and funding for research.
2. Tough journeys lie ahead of you but do not worry, for you are resilient
Having Cystic Fibrosis always made me worry about the future. It’s been hard to visualise a future and goals that are attainable knowing all of the social constructs that are in the way for people with disabilities, -(yes, Cystic Fibrosis is classified as a disability, because it is a chronic life-threatening lung disease).
It has been exhausting trying to gain independence and a life of my own. I’ve seen both of my younger sisters graduate from college before me and one of them buying her first car and first home. Even now at 30, I am far from obtaining these things.
I thought that overcoming these obstacles and achieving those milestones was as difficult as it was going to get for me. Little did I know, those things would be far from my mind once I was diagnosed with Cervical Cancer at 27 years old.
I’ve learned that there’s no point in worrying about hypothetical situations because generally, everything turns out okay in the end, and if it’s not okay then it’s not the end.
I wish I knew of the strength that I have and all I would survive. My resilience always gets me through.
3. Stop comparing yourself to others, there is no one like YOU
As you can probably tell from my previous point, having CF has definitely made me compare my life to those around me. This created a ‘lack mentality’ within me that carried through into many aspects of my life. It often even made me stick out in relationships with men that weren’t good for me because I thought having CF was ‘too much baggage’ for anyone else to take on.
Of course, I know now that everyone has something that they struggle with or at times can view as ‘baggage’. But it’s not baggage, it’s just life! We all have our own cr*p, and that’s what makes us who we are in one way or another. This is definitely something I wish I knew sooner.
4. Holistic therapies drastically improve your health!
Okay seriously, this one has been LIFE CHANGING for me and I wish I had been told about all of the different complementary therapies that exist the day I was diagnosed.
I am now 30 years old, have recovered from Cervical Cancer and treatment for it, have a mycobacterium, and also in recent years, have grown pseudomonas. Yet despite all of this, I have never felt better! I know that this is definitely due to the different holistic therapies that I practice to keep my energy levels high and infection levels low.
If you’d like to know more about what particular therapies I use, you can sign up for my newsletter here.
5. There is trauma involved in this diagnosis
My last blog piece covered this in greater detail, but it is still worth mentioning again here. The emotional and mental strains of any diagnosis should not be dismissed. If undealt with it can manifest into anxiety or depression. This in turn will affect how you value your health, medications, treatments, etc., and whether you bother to do them or not.
I learned this the hard way as I describe in my other blog post which you can read here. But to reiterate, traumatic events look different for everyone. It’s easier to understand them when we put them into 2 groups; Trauma with a Big ‘T’, and Trauma with a small ‘T’.
Big T= Life changing health issues or diagnosis, a global pandemic and/or prolonged isolation due to the pandemic, loss of a loved one, catastrophic events, forms of abuse or assault, war, natural disasters, etc.
Small t= Conflict with family, a sudden change like moving location, infidelity or divorce, a broken family, financial or legal worries, and so on.
Being diagnosed with a life-altering condition of any kind is trauma with a big T. It can stir feelings of overwhelm, stress, fear, anger, grief, shame, guilt, and deep sadness. But there are so many healthy ways to deal with this trauma and the sooner you do so, the sooner you can get back to living your life with the goals you originally intended on achieving!
You can learn more about me and my health journey by the options below!
Aoife P R
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