I have cystic fibrosis, and I’m furious about it. This is not something I’m sharing that comes with any inspirational payoff. I’m just acknowledging that I am angry about it, and that I’m allowed to be.
I was diagnosed in 2016, in my final year of my primary teaching degree at university. After being unwell for a considerable part of my life, and many perplexed looks from doctors, assuming I had nearly everything else under the sun, one day in April my then specialist wiped his hands of me and handed me to the Alfred Hospital with my files, like some wayward delinquent being sent to the orphanage. I was diagnosed that day.
This was especially heartbreaking for me and my family, seeing as I had lost my older sister Gemma in 1998 from CF. It was a triple whammy really, being faced with this final full stop on a never-ending and laborious essay about my health and my life. But facing something that was ultimately so familiar at the same time, the visceral emotional nature of what CF was to everybody around me came flooding back.
Opening old wounds sounds so cliched and so generalised, but it was true. Except it was an old gaping flesh wound bound together by impossible stitches unraveling and gushing out of me all at once. Think 1917 war wound treated by a ‘nurse’ who was really just a lady wanting to volunteer in the armed forces.
Despite being so unwell, I had a life and I had plans for my future that suddenly came to an end. In a nutshell, I was due to start travelling at the end of the year, first to Scotland and then to who knows where. I would’ve had a degree under my belt, and for years I was building a future that was due to begin in less than eight months. But that soon changed. I was advised to drop my studies, there was no way that I was getting on a plane in the foreseeable future, and I needed to be admitted for a long admission for more tests and antibiotics.
So pretty much everything I had to look forward to was just no more. I had worked and built a future for myself for five years, and it was gone in about 20 minutes in a stuffy room at the Alfred.
Fast forward to 2020, and I have since managed to complete a few things I wanted to do, but I’m still angry. While I was processing this diagnosis and the implications for me, many of my loved ones kind of expected me to be this figure of hope, that I was this shiny beacon of martyrdom. It made me feel guilty about my anger, because I was kind of expected not to be. I was expected to be inspirational, and I was too guilty not to be, so I decided to pretend to be for a while.
Hopping onto Instagram, we see many profiles of people who are battling illnesses. They post photos of themselves with a thumbs up from their hospital ward after going through particular treatments. They share quotes from Oprah Winfrey and Maya Angelou about their life as a metaphorical garden, their pain being the drought and something about them being a seed growing into a flower eventually. Don’t quote me on that. Let me say as a disclaimer to these people posting like this, it is not a criticism. For some, a platform to share their journey and rise above their pain by sharing their health highs and lows is something that fills them with love and hope, and my main motto in life ‘Just do you’ is important here. So I tried to do that thing. I shared photos of me in hospital. I would find pretty looking quotes and splash them onto my Instagram page with hashtags like #yougotthis #nailinglife. But deep down, I felt like a complete fraud. I just wasn’t buying what everybody around me expected me to be, and I felt ashamed.
There is no guidebook for how you cope emotionally with a chronic illness. And by God, I wish there was. Just like adolescence in a way, being diagnosed as chronically ill, you must find where you fit in. And that felt just as daunting a task to me as finding the right clique to sit with at the canteen in Year 7. There are many people battling different things, and you have to find out where that might be without anybody around you as a guidepost.
Social media can sometimes give us unrealistic expectations of how to cope with chronic illnesses too. Looking back, my family and friends were saturated with that ‘Wellness Warrior’ lifestyle and they sort of just thought there was no alternative to be that way. But what if you didn’t have the energy to fight battles? What if you could be sarcastic, and mean and loathsome on certain days? What if you just wanted to sit on the couch and eat your feelings (my preference is Twisties)?
This brings me to the emotion of anger.
I think there needs to be a space for anger and rage. I believe you can turn that rage into something to propel you forward, to motivate and drive you to achieve something. Being motivational just wasn’t my jam because I couldn’t turn that into something for me at the time. When my doctors advised me to drop out of my primary teaching degree, and for that matter ‘re-think’ my profession due to the nature of my illness, I was angry. I was also incredibly devastated and upset, but the one emotion that was clear to me at that time was rage.
Something kicked in for me when I processed what was said to me that made me disbelieve the so-called experts. Do all people with CF not become university graduates? Am I legit the only person in the world with CF who is in the teaching profession? I don’t think so. I wanted to decide for myself if I could make it to the end of my university studies, and I wanted it to be up to me to decide if the teaching profession was too taxing on my health. Well, I graduated with honours and I got myself a graduate teaching position the following year. I made concessions and adjustments along the way, but I did it. And I think if I had pushed aside my anger, I probably would have listened to the doctors that day and I’d be sitting in a chair at home, without any direction or focus.
Growing up in my family, we always called productive anger ‘the inner mongrel.’ It’s this wild beast that lives inside all of us, snapping its jaws, saliva and spittle coming out of its mouth. It is baying for blood and good luck to the person or thing on the receiving end of its wrath. It means war. There are times when you unlock the cage and release the beast, and it can disarm attackers, divert the course and put you on the right track. It can make you stronger and more empowered. But knowing when, and how to use it takes work.
In 2016, there was no lock on the cage, so this mongrel would come out at times when it didn’t need to. It attacked innocent bystanders and it sometimes tried to attack me. I had to learn that there needs to be a lock on its cage, and only when I needed it, should it come out. However, if I’d locked up this monstrous beast at the time those doctors told me to stop studying, stop working, and essentially stop living, I wouldn’t be where I am today.
I don’t have all the answers yet about where I fit post-diagnosis. I’m still in that canteen, trying out different tables, sussing out the environment around me. But what I’m slowly learning is that it’s okay to be angry. It’s okay to say how unfair it is, and it’s totally fine if you don’t believe those inspirational quotes right now. Maybe one day you will. Perhaps you won’t. Perhaps you might find inspiration in watching Harry Potter movies. THAT. IS. FINE!
And for anybody out there feeling furious about how they ended up down their own dark path, you have every right to sit in that space for however long it takes. Use your anger, feel it course through your veins, get to know the inner mongrel inside you and use it on your adventures, but above all, prove those skeptics wrong in whatever way you can manage.
Perhaps there should be a movement for people like me who, at times, sit in that grey area between pain and acceptance: #befurious comes to mind. What do you think?
Shaun
* This is a personal story and may not necessarily reflect the values of Cystic Fibrosis Community Care