Mental Health Vs. Cystic Fibrosis: Feeling The Fear And Changing Your Life Anyway
Many of us are no stranger to mental health and that has been more apparent in recent years when people have felt confident giving a voice to what is really going on inside our busy monkey minds.
The thing is, having Cystic Fibrosis (CF) means you feel you live in a state of having absolutely no control which is ironic really because nobody really has any control.
But, this feeling seems super heightened when there is something untouchable living in your shadow; every hospital appointment, every test, every procedure feels like it probes your mental resilience that little bit further.
What A Lifelong Breakdown Looked Like
Being an 80’s baby with CF, I had no shortages of average life expectancy predictions and, growing up I see many of my fellow CF friends suffer at the hands of our relentless, cruel condition. It frightened me which made me an angry child and an even angrier, disillusioned teenager.
The state of my mental health spiraled out of control when I hit my teens which led me to ignore treatment, miss clinic appointments, refuse to acknowledge my health (or lack of) and only go in for treatment when my body had literally given up.
This was all because I felt utterly defeated, always ruminating over a niggling thought: “CF will win so what’s the point” but there was a point. There is always a point.
For longer than I want to remember, those 7 little words drove me to insanity. Funniest thing about this was, by ignoring and pushing CF away, I actually thought that was me controlling those all important pedals on my ride through life.
The Black Dog, My Old Friend
It didn’t. It didn’t help at all, in hindsight it was a fast track to a destructive and volatile path. My despair hit like crashing waves and presented as a sombre mood, a place where I would hibernate under a duvet for days without any interaction with people; hours sometimes days, days sometimes weeks, weeks sometimes months.
I was riddled with guilt for putting my family through this. I wanted to be better, bigger, stronger than this but I wasn’t. Inside I was suffocating from my emotions.
Running Out Of Time But Into Self Destruction
When my depression wasn’t keeping me in bed, my anxiety would take center stage, this was more of a constant and it just felt as though I was running really, really fast from something very, very dangerous.
My thoughts were racing and alongside this, the steroids used to treat my chronic lung inflammation were just adding to the cra-cra cycle.
At first, living in the fast lane felt enjoyable. Hell, I was avoiding and dissociating with all my feelings, of course it felt like I was on top of the world. I was winning and achieving something but I had no idea what.
Continuously I was trying to live life to the fullest because I had an extreme fear of dying much younger than I wanted to — an around the clock reminder to fit everything in before I was 30 and it was immensely tiring. My depression would feel like a deception when I was just speeding through life ticking things off my perpetual bucket list.
Reaching Out To Get Help
Over a decade ago I came into my early twenties and through sheer exhaustion, both mentally and physically alongside endless battles with myself, I reached out and sought help. I needed and, wanted, to address my lifelong breakdown.
I initially spent 2 years working weekly with my CF psychologist, picking apart my unhealthy thoughts and retraining my mind; to this day I still thank her for saving me.
This wasn’t the first time I had tried to reach out, several interventions before had happened and failed. One positive thing Cystic Fibrosis did teach me is never stop trying and I am so grateful that I didn’t.
When The Time Was Right, What Really Helped
So, there was a lot to untangle inside my head. A loud, off putting inner critic with 20 years of unhealthy beliefs and coping strategies…
Firstly, we started working on my feelings towards CF and life expectancy; we completed exercises that were very simple and in a way childlike at times — drawing CF monsters, imaging what they felt and looked like; bringing CF to life in a very different way.
Then we worked on the messy wiring of my erratic mind. We translated racing thoughts and worries into trains or cars piling up at junctions and learned to create a steadier, calmer flow of traffic.
We made space for CF and drew mountains to see it as a continuous journey with peaks and troughs rather than a constant linear journey. I wasn’t just living or, racing to 30, I was learning to enjoy the journey inbetween and the moments right now rather than getting caught up in the illusion of time.
Face To Face With Treatment Adherence
One of my biggest internal battles was treatment adherence. One part of me desperately wanted to do it but the other part fought against it with all its might and more times than not, it won.
That led to feelings of disappointment, guilt and shame which in turn made it harder to retry and so on. I truly believed I was failing at something that was easy.
“This Is Really Hard”
Hearing my therapist say “This is really hard” changed my life.
Actually saying “This is really hard” changed my life even further.
Those two little sentences gave great weight to something that many people made me think was supposed to be super easy and manageable.
Yes, the practicality of doing chest physiotherapy or a nebulised antibiotic was pretty simple but that didn’t account for actually mentally and emotionally sitting with CF itself. That is the tricky part.
Chronic illness, mental health, and just life in general is a complex, nerve-wrecking territory and navigating your way around them isn’t as easy as some people make you believe.
Calming My Monkey Mind On A Daily Basis
I started practicing mindfulness to help manage my anxiety by signing up to headspace to complete their 30 day beginner course.
At first, I thought it wasn’t for me until day 21 when I experienced a profound body scan and realized I was capable of stillness within myself; I haven’t looked back since.
I practice daily, sometimes for a few minutes and sometimes for an hour depending on what I need. I also attend a free weekly mindfulness group with MIND Greenwich which is open to all.
Continuing To Live, Not Just Survive
I spent years running away from my feelings and my condition because I was scared of facing them. I thought what was hiding behind my fear was holding me back when in fact, it was just the fear itself.
Having CF scared me, my mental health broke me and then they made me brave. Now, instead of running away really, really fast, I sprint towards my challenges and by embracing them I overcome them.
I still hit a trough and have a down day (or week) when CF is getting far too much of my precious time or, just because on occasion I get out of bed the wrong side but, I keep climbing those mountains to find those peaks because I know they will always be there. That’s what I believe life is all about: balance and bravery.
So, yeah, feel the fear and change your life anyway… and remember nobody is getting out of here alive!
What I Have Done Since My Journey
I am a true believer in:
“BE THE DIFFERENCE YOU WANT TO SEE IN THE WORLD”
Since 2007 I have used my journey to assist NHS workshops in highlighting how mental health goes hand in hand with CF and most chronic illnesses. I have openly spoken at conferences to give a candid and very authentic insight into what a patient with chronic illness is experiencing both physically, mentally and how that effects every part of their life.
The aim is to disintegrate the ancient beliefs such as; patients should just be capable of managing lengthy treatments, go though anxiety provoking procedures and adapt to the chaos of chronic illness without batting an eyelid.
The purpose of sharing my journey with professionals is to ensure Doctors and all healthcare workers are acknowledging and giving a genuine empathetic approach to patients (and parents) managing their condition 24hrs a day, 365 days a year for the rest of their lives.
*If you are suffering from mental health or anything in this article has triggered you, please reach out to family,a friend or professional. If you are having a severe mental health crisis please free call the Samaritans on 116–123 or NHS England on 111.
