Mental Health. A tough subject to tackle yet a necessary one to discuss. I’ve been trying to write this post since September last year (about six months now!!) and because it required me to delve into the depths of my brain and pull out chunks of my past, I understandably kept putting it off! I think it’s important to mention here that I’ve never felt comfortable talking openly about my mental health…but now? Well now I feel like I need to talk about it.
Mental health isn’t just a black or white thing, it’s a complicated little bugger.
For me, Cystic Fibrosis isn’t just a physical challenge but a mental one too. It’s a battle to come to terms with what CF is, and all that it has in store. It’s a battle with the unknown, and with the known. This is gonna get a tad personal here and a titch on the negative side… I always try and keep the blog positive but it’s not always a dandy life and I want to get the message across that it’s okay, not to be okay.
Now my childhood is very much a blank space in my mind, trust me I get grief for not remembering family holidays when I was young… But there’s a particular moment in my life that seems to be burned into my brain.
I was around 13 years of age, looking on the big, bulky computer for a piece of homework I had started, and no doubt left to the last minute to finish. I was scrolling through files when one caught my eye. It was labelled Cystic Fibrosis and I thought ‘hey that’s related to me!’ So I opened it. It was a word document which had a copy and pasted paragraph on. The exact words are hazy but it went something along the lines of “Cystic Fibrosis is a genetically inherited disease with an average life expectancy of 32”
You may or may not have noticed that I don’t mention the words ‘life expectancy’ on this blog, or in my videos because of the detrimental harm it caused me here. And I’d hate to be the one to do that to someone else.
Eleven years on and I can still remember just how much it was a punch to the stomach. I can’t explain to you how small I felt in that moment. My heart had plummeted. My brain was numb. My stomach sick. I re-read the sentence over and over. Thirty two. But that wasn’t far away, I thought. Surely that wasn’t right. I felt… insignificant. And I remember clearly changing the percentage of the page from 100% to 10% so that it resembled a small rectangle on the screen. I closed it down. I don’t remember if I finished the homework.
I feel like that was the moment my mental health started to change. The combination of that and bullying was a turning point.
Without intentionally doing so, I became more introvert than normal. I would never have noticed it back then but on reflection, I was internally angry and sad. When things began to bubble over, I would race up to my room and clutch my head to try and make it stop. I’d go to sleepovers and feel so out of place that I’d want to go home. Some days I was ok, other days there would be a negative, sarcastic voice in my head that would hold me back from joining in or even talking.
You see back when I was at school, I had never really heard of, let alone understood what words like depression and anxiety was. It wasn’t really known to me what it was. And I would never have believed that I had some form of it because I would often pretend that I was fine. More for myself, I think.
Throughout my stay at secondary school I lived two lives. The Kate who did all of her medication like clockwork and the Kate who as soon as she got to school, didn’t have CF. Somehow I had separated the two so that when I was at school I could live a lie, almost live the life I wish I had. And it worked. I managed to convince myself, for the most part, that I didn’t have CF. The tummy aches, and the frequent illness said otherwise. But I ignored them as best I could and tried to fit in with the rest. At the back of my mind though, I felt like there was a barrier in which I couldn’t join in because I was so different. And on some occasions those thoughts would surface to the top and I’d become very reserved. I had stumbled down the rabbit hole.
There were times when friends would come over to my house and I’d hide everything to do with CF. Whether that was my pills, nebs or even just a letter from the CF Trust. I was so scared that I’d be judged, or that people would look at me or treat me differently. I was terrified I’d lose friends over it. (Of course now I realise that the people who do judge me aren’t the kind of people I want to hang around with. If your friends can’t handle the truth, ditch them. Trust me, they aren’t worth it.)
But the fear of judgement held me back as I went into my first job after leaving sixth form. I didn’t tell anyone at M&S except from the interviewer who was my manager. I was so nervous about telling her but I knew it was imperative that I did. So I just did it without thinking, repeating the line I had practiced over and over beforehand, ‘I’m not sure if you read on my CV but I have a condition called…’ I just remember my brain felt numb.
Other than that, I didn’t tell anyone. It’s not like I bounced into work saying ‘hey guys guess what I’ve got!’ it just never came up in conversations. But this is where Tom aka the boyfriend comes onto the scene. Obviously he didn’t know about CF and I didn’t tell him till the third date.
My thoughts back then were pessimistic. I remember so vividly thinking that when he finds out I have CF, it will 100% put him off. I was so confident it would, that I believed it myself. DISCLAIMER! It didn’t. If you want to know how I told Tom about CF and his reaction, you can watch this video here.
I state in the video how hard I found it after I told him because I had always lived a life where I didn’t show people I had CF. So doing my pills in front of Tom or doing my nebs was extremely difficult. He unintentionally turned up the volume on the demons in my brain. After the first couple of months of dating, I realised two very strong feelings within myself. The first was embarrassment. The second was shame. I felt embarrassed and ashamed that I had CF.
Which isn’t easy to say, let alone feel. And what’s more I realised that I had been feeling these emotions for years but had never tackled them. So I really didn’t know how to deal with it at this point. I then lost my job. Because I had had four days off ill aka because of CF. So with everything mixed in together it set me spiralling down into deep despair. For a long time, I would burst into tears every day, sometimes not knowing why. It was a strange sort of time because one minute I’d be fine and literally the next minute I’d be buckled over from the weight on my mind.
On top of that, there was Tom. I had managed to find the most incredible and supportive guy who had readily accepted CF and who obviously cared so deeply about me, yet I felt nothing. I can’t begin to tell you how much that tore me apart. And what’s more I knew he was the right guy, or if you wanna be cheesy ‘the one’. I knew that in my mind. But my heart was a broken mess.
Of course with most things in my life, I hid these feelings. I pretended everything was fine. I spoke to a friend who said that maybe I will take a little longer to feel something than him. So I waited. And waited. I tried to make it work, but it just pulled me apart. I didn’t want to hurt him, so I continued to hurt myself. Some would say it’s noble. I say it’s stupid.
I wasn’t happy. And Tom knew that, which ultimately made him unhappy. It got to the point where I didn’t know what to do anymore until one day I was watching a YouTuber do a Q&A. Someone asked her what to do when you feel so unhappy in life. She said talk to someone about it, if not a friend then a professional. And it clicked. I knew what I was finally supposed to do. Find a counsellor.
There was an option to go through my GP and get a referral, but I was worried that somehow the hospital would find out and then my parents would find out. I felt embarrassed about needing help. Instead I googled counsellors in my area and an online directory came up with names, faces and qualifications. I found a lady and got in contact. We arranged a date to meet. Tom drove me there and waited in the car. Unfortunately, after the hour I spent nervously mumbling to this lady I felt discouraged, which left me disheartened. I didn’t want to find someone else and have to go over what I’d already struggled to say aloud. But things didn’t improve with my mental health, nor with my relationship with Tom, and after a particularly bad day, I reached out to another lady who offered the first session for free, so at least if it didn’t work out, I wasn’t any worse off with money.
Thankfully in February 2015 we connected. But it wasn’t easy. It was about opening a box in my mind and unpacking different things in order to repack it back into the box for good, or to let go of it. It was real tough. I found it difficult to talk to her, or even look at her and often I’d leave a sweaty mess. But I kept at it every week. It was quite lucky I was a dog walker as after a session I would go straight to a walk and I could reflect on everything that was said. Although often I’d leave with my brain numb!
At the time only Tom knew, as I didn’t want anyone to know just how much I was struggling. I also knew that if I said I was seeing a counsellor I would get hailed with questions from my parents which I wasn’t prepared to answer at that point. I also didn’t want to worry them.
I was a closed book, not wanting anyone to know anything for fear of judgement but I also had massive trust issues. I’m not saying I don’t trust my parents or brother, but if I told them then it would be out of my control.
So I kept a small circle. Just me and Tom. When I felt ready, and comfortable I told them in strict confidence and to this day they have been incredible and not told anyone. I’m so lucky to be part of a loving and respectful family.
Anyway after a couple of months of counselling I realised the grim truth about why my relationship with Tom wasn’t working. Why I was so unhappy and why I didn’t feel the same way. How could I love someone else when I didn’t love myself? I hated myself. And CF was a huge part of that. I wanted to learn how to accept having CF. But I also needed to learn how to love me.
I needed time for myself. So we broke up properly. I wanted to get away and do something spontaneous and fun. I booked to go travelling around Europe on my own but with a company for two weeks. I had the best time and I came back a totally different person. (Don’t worry, eventually Tom and I got back together!)
But I still saw my counsellor every week because it’s not about a sprint, it’s a marathon. Mental health takes time. I had to really stick at it. In August 2016 I had an idea that changed my whole perspective on living with CF. It had become such a negative in my life which affected me every day, but something that made me happy was writing. So I decided to turn a negative into a positive and start writing about it. Publicly.
In March 2017 this blog was born. And it’s been life changing. It not only helped me to tell people that I have Cystic Fibrosis, but it’s helped me to raise awareness and yet been therapeutic to write about a part of my life that’s been hidden for so long. It’s totally changed my outlook on having CF. Instead of persistently ignoring it, I began to embrace it. I then started creating videos on YouTube about it, so I was using two of my creative passions to lessen the struggles of having CF.
I also started interacting with other CFers online and although we are all so different, I started to feel like I was part of a community for the first time in my life.
After two and a half years of counselling in May 2017, I felt confident enough to say that I didn’t need it anymore. Let’s get metaphorical for a second about my counselling journey. From the beginning my counsellor was there to make the wobbly bike steady, and as I rode into each month, year, I felt the bike start to become balanced or lighter after shifting the weight from my mind. But when I had my last session it was like she let go of the bike and pushed me gently into the next chapter. Some days I pedal harder than others, but I’ve learnt that what goes down must come up. (Damn that was poetic!)
I still have bad mental health days but I’m so much more aware of it now and I often use the techniques that I was taught in counselling.
For example, recently I crashed in January. It knocked me out for a week. I’m talking no motivation, no hope, and no happiness. But because of counselling I felt different. I learnt to accept that I was having a bad week of mental health…and that was OKAY. Instead of trying to push it away, I knew I had to go through it to get to the other side. And yes that meant I had to turn down a family meal…but that was OKAY. Sometimes you need to give yourself a break and not push yourself into everything if your brain doesn’t feel up to it. It’s okay not to be okay!
A few days after I was reluctant to go to another family dinner but because I had given myself a break, I was starting to feel better. So I went and the result actually helped me push through the last bit of hopelessness I was feeling. My cousins mentioned how much they enjoyed my videos, when over the last week I had felt useless, untalented and certainly not creative. But a few simple kind, genuine words helped me get over that last little bit of self-doubt.
And I know I’ll crash down again because that’s just how life works. But for me, it’s all about accepting the crashes and however long it takes to get through them, so long as you are moving forward and not getting stuck.
I used to feel embarrassed about having anxiety or feeling sad and hopeless but I’m not anymore because I know I’m not alone in feeling these things. I also learnt how to deal with the negative thoughts, and really challenge them. I can’t recommend seeing a counsellor enough if you feel like you are struggling. This, of course, applies to EVERYONE of all ages and not just CFers. Never feel ashamed about needing help, because admitting that you need it is a sign of true strength.
Don’t forget you can go through your GP and it won’t cost you like a private counsellor does. Personally, I felt more in control by choosing who I wanted to help me. Although working a part time job and paying to see a counsellor was extremely testing at times but I don’t regret it one bit. It was worth every penny.
Just by writing this blog post now, shows how far I’ve come. I feel so much more open after talking to someone about the innards of my confusing brain!!
For the longest time whilst growing up I thought I was over exaggerating, when it came down to how I felt. I thought I was overreacting to things. I thought that it was nothing and it was just simply something I had to live with. But it’s not. For years I pretended I was fine until it got to a point where I was struggling so much that I couldn’t see any other option…
“And the day came when the risk to remain in a tight bud was more painful than the risk it took to blossom” By Elizabeth Appell