5 Things I’ll Never Forget:
It’s ok to not be ok.

This post is Part 4 in a series based on a presentation I recently did. The rest of the posts can be found here.

I have some friends who joke that there’s some debate over whether I really qualify as a renal patient. Compared to what some of them have lived through, and in many cases are still dealing with, my own circumstances look like a walk in the park. I have a successful transplant, so surely my life should be completely fine and sorted. I’m very lucky, so I certainly shouldn’t be complaining of any problems. All my ducks are in a row…

Only they’re not. Many days, this is closer to my reality!

I’m absolutely not suggesting that I don’t realise how lucky I am, but I do believe that comparison is a dangerous road to go down in situations like this. In my case, it led to a huge amount of guilt, and an awful lot of questions.

Why was I struggling so much, with anxiety, lack of motivation, and probably a bit more depression than I realised. Why was I feeling this way? After all, I was one of the lucky ones. I knew so many other people who were “worse” than me, and not only were they coping, they were thriving! Whenever I thought about them and then thought about myself, I fell short every single time. How could I not? My lack of resilience felt embarrassing.

“You don’t need help, you just need to get a grip!”

The shame and criticism shouted at me by the little voice inside my head meant that for far too long, I didn’t ask for help. Feeling as if I shouldn’t be struggling as much as I was had become a barrier preventing me from getting the help I needed to deal with what by this point had become some quite significant mental health difficulties.

This is where I have to say I’m so grateful that my hospital provides a renal psychology service. Within a four year period during which I went from pre-dialysis, to starting PD, to receiving a transplant! These sessions went a very long way towards helping me “sort my head” out. Having the opportunity to talk to a psychologist without needing to spend half the time explaining what my medical condition actually consisted of was brilliant. I cannot tell you the difference it has made to my life.

It until I actually asked for help that I realised how badly I had needed it. The support of an objective professional whose only job was to help me to help myself showed me that dealing with my illness was not a competition. It was never a case of “worse” or “better”. What other patients felt or didn’t feel simply wasn’t relevant to me. None of us can ever know the full story of what’s going on inside someone else’s head. I needed to focus on myself, and start to address my mental and physical health with equal importance.

Just because I was physically healthier than some of my peers didn’t mean I wasn’t allowed to have problems, or that I “shouldn’t” have accessed mental health support. It was ok that I needed it; I wasn’t pathetic or self-indulgent or ungrateful. I simply felt the way I felt, and the fact I’d recognised this meant I could start to deal with it.

Ultimately, nobody going through any chronic illness, whether it be kidney disease, organ transplantation, or something else entirely, needs to feel guilty for struggling. While not every hospital has a dedicated psychologist, they will all have somebody who is able to talk to patients about the ways dealing with a serious medical condition impacts your mental health, and to point you towards the support that is out there. It’s ok to not be ok, and it’s ok to ask for help.

“Of course it is happening inside your head, Harry, but why on earth should that mean it is not real?”
– Albus Dumbledore