Shrinking the Silence

Sharing a voice on living with rare disease

I struggle with my mental health and that’s ok — November 27, 2020

I struggle with my mental health and that’s ok

I’ve been meaning to write about my experience with mental health for a while but it is a really hard one to tackle. I hit a bit of a milestone last week though, which has got me reflecting of my progress over the last 5 years. 

I had a session with my psychologist last week and we realised that I have been doing pretty well for a while now, so I left without making another appointment, knowing that I can come back if and when I need to. It’s a great feeling but also one that comes with a bit of fear because therapy has been like a security blanket for me and also got me through some pretty tough times – my diagnosis of FAP, recovery from major surgery, breakups, toxic work culture of an old job (not my current job!). But the good news is that I have learnt some very helpful strategies to cope if I need them again down the track and I do continue to be on medication which keeps my symptoms of obsessive thoughts out of sight! 

It took me a while to seek help, and the reality is the trigger was my diagnosis of FAP but I was struggling with my mental health prior to this but was just doing pretty well and masking it and going on with life because it wasn’t something that was really spoken about. Anyway, back to the timeline… so when I got diagnosed I saw my GP who gave me a referral to psychologist and was very diligent in following up on any other support I may need. I appreciated the thought but was there thinking… I’m fine? I’m 25 and I just need to push on and focus on the surgery ahead of me, aint nobody got time to talk about my feelings!

As surgery loomed closer and pretty difficult conversations  started being discussed I realised that I wasn’t coping so I made my first appointment and here I am 5 years later not looking back. I was very much a closed book for the first year or so, thankful that they persevered and got me to open up because I don’t know what state I would be in now if I hadn’t gotten on top of what I was feeling. In the year after my diagnosis and leading up to surgery I was a mess of dark thoughts because I was in a limbo where I needed to put my 100% trust into specialists I had just met – a common thought was what if they’ve got the staging wrong and cancer is already growing in me, am I going to die young? I needn’t have worried because my surgeon is a champ and very skilled so I am A OK! 

So I did open up a little through these sessions – but I still remember the realising how much I was still holding in when I was finally allowed home after my surgery. I had been cared for around the clock at hospital and when I came home it was such a relief but also terrifying because I was faced with a long recovery ahead of me and the knowledge that monitoring and regular surgeries/procedures would be part of my life forever. I broke down, uncontrollable tears! For those who have met me you would know that I rarely cry so this was very unusual but quite cathartic. 

As I got through my recovery from surgery, my psychologist encouraged me to think about how I could find an outlet for what I was going through, and soon after I started this blog, Shrinking the silence, which has helped me so much. I’ve always been better at writing down how I’m feeling or going through, so it was the perfect spot. I had been journalling before but there was something about putting it on a public page that made it more real and it also had the other purpose of potentially reaching others who were going through a similar diagnosis and struggling to find helpful information and personal experiences (trust me… when you have rare disease or cancer the internet can be terrifying and quite negative). 

So at this stage, life was pretty dandy – I was back to somewhat normal life, back at work and working out how to stop living in my illness. Then came along my good friend, desmoid the aggressive tumour. Out of nowhere I now saw an oncologist and had to start chemo. Cancer is scary, terrifying, but everyone who works in the field of oncology are amazing people. My oncologist was very intuitive and could sense that I was coping by not focussing on what was happening to me and just pushing on (very true). He would ask me each appointment for 3 months or so how I was coping and I would answer back, yep I’m fine, doing well… lots of support around me, talking to a psychologist about it etc etc. 

He left the choice to me which I appreciated, but let me know that I might benefit from seeing a psychiatrist and exploring if medication could help me in this really tough period. What I hadn’t mentioned to him or anyone was that I was having some pretty terrifying thoughts on a regular basis that were really upsetting me. A month or so later I asked him for a referral and I’m so glad I did. I’ve been on medication for a few years now which help with my obsessive thoughts and enable me to go about life with limited set backs. 

If you’d asked me 6 years ago before any of this medical stuff happened to me if I would consider seeing a psychologist or psychiatrist, let alone be on medication for it, I would have laughed at the idea. That in itself is a scary thought because I desperately needed help but didn’t want to believe it myself. 

Aside from the obvious of controlling my symptoms – therapy has opened up a whole new world for me of valuing myself, my boundaries and my relationships and I couldn’t speak more highly of seeking help for your mental health.