TW: Mental health, anxiety, depression, trauma.
One thing I never counted on was the mental implications of a physical illness.
When I was diagnosed with UC, I’d been flat bound for nearly three months. I wasn’t eating properly, I couldn’t stand on my own and spent most of my time either in bed or on the toilet. I was in constant pain and had no clue what was wrong with me. Prior to that, I’d been through three doctors; all with very differing opinions; one said cancer, one said nothing and the third said “maybe it’s your menstrual cycle?”. So before my pain had a name, I was struggling physically and mentally.
These are all mental side effects of a physical illness I have experienced.
First was obsession – I was obsessed with controlling what I ate. I blamed my UC on food; despite my GI telling me it wasn’t diet related; and would spend hours going through the internet of foods I thought I could, or couldn’t eat. I felt like my life was out of my hands and the lack of control over my health pushed me into this obsession with food. I whittled my diet down to dry toast and decaf tea. OK it still hurt, but not so bad I passed out – like everything else. Eventually, I stopped eating altogether, just so the pain and fear of pooing would stop.
With all this came anxiety, and a nauseating fear of doing just about anything consumed me for months. When I had my colon, it felt like someone was sitting on my chest and holding my throat. When I had to leave my flat for a hospital appointment or get in the car; eat something, go to sleep or even chat to my GI, I carried that anxiety. It controlled every thought, every muscle movement and everything that came out of my mouth. This carried on for a while after my surgery. Still I found it difficult to separate eating from pain. It took about 3 months after my operation, for that anxiety around food, leaving the house and seeing my doctors to subside.
Then, there was loneliness and depression. I couldn’t walk more than five feet without needing to sit down, so leaving my flat felt too scary in my colon days. I would watch the world spin through my phone – every snapchat video or facebook post just made me sad. Seeing everyone living, while I was surviving upset me and after a while, annoyed me. Not because I was jealous, but because I felt forgotten. The more I struggled to cope with my UC-colon, the more detached from the real world I became. I felt I could relate more to Barry, the 65-year-old retiree with Crohn’s disease who would sit next to me on my infusion day, than I could with healthy people my own age. So I stopped contacting them. I was tired, angry, in pain and upset with my own body and couldn’t talk to someone who didn’t ‘get it‘; so I isolated myself. I didn’t want to read another link to some bullshit article titled, ‘think yourself better‘ or hear someone tell me the next drug would work; when I knew it wouldn’t.
It’s taken me a long time to see my experience with UC and surgery as traumatic. The word ‘traumatic’ feels hysterical, but I really did go through trauma. I spent well over a year in constant pain, going from hospital to hospital. I had invasive tests that left me feeling dirty. Every time I lifted food to my mouth, my stomach would tighten and with every chew I was just waiting for the pain to start. I became terrified of a normal bodily function. Then there was going through a huge operation and coming out the other side with a stoma. A lot to handle at 21.
So how have I coped with the mental side effects to a physical condition?
Truth is, I haven’t. Not one bit and I haven’t had the courage to ask my doctors if there is mental health support to deal with all this. Since my operation, the obsession, anxiety and loneliness has subsided. I eat without pain, can go. out and see my friends, have a new job and live an incredible life with my stoma! But the trauma is still there. At the moment it’s locked away in a box in my mind somewhere and I can’t bring myself to open it. I think writing this blog is my first step to seeing how much it’s affected me.
Dealing with the mental impact of physical illness takes time. In the last year, I’ve realised I need some mental health support and admitting that was a big thing for me. The next step is asking for the help, but I’m not quite there yet and that’s ok. It’s a process you have to do in your own time. There’s no rush and no one should push you into a situation you’re not comfortable with.
That said, never suffer in silence. I did for too long and I regret not reaching out to a professional sooner. My colon was the root cause to a lot of my mental struggles and having that taken out helped a great deal, but for some it’s not the same story. I’ve had incredible support in friends and family, but now I see a professional can help me in ways they can’t. There will be someone there who wants to listen! If you are struggling, don’t feel ashamed for wanting to talk or stressed that you’re too afraid. These things take time. As long as you know, you’re not alone and you can always reach out to someone close to you or speak to The Samaritans, CCUK Helpline, Mind or your GP.