This post is Part I in a series based on a presentation I recently did. The rest of the posts can be found here.
The photo of me on the left is how I thought my life was always going to be. A busy, full-time career working as a primary school teacher. That is, until it wasn’t. Three months after this picture was taken, everything changed.
I’ve already written about what happened to me when I first got sick and how I was diagnosed, so I’m not going to repeat myself, but what I haven’t talked about so much is the impact this diagnosis and the way it came totally out of the blue, altered the view I had of myself.
When I first found out that I had it, I didn’t even know what chronic kidney disease was, let alone the extent to which my life would change because of it.
At that stage, even though I was an adult, one or both of my parents came to most of my clinics with me. They were understandably anxious about what was happening to their daughter, and despite their best intentions, this led to them almost dominating the appointments. This in turn led to me feeling like these circumstances, and this diagnosis, wasn’t really happening to me. I was physically there, but my mind was miles away. I was totally disengaged.
At the time I didn’t realise it, but looking back now, as a considerably more assertive and confident patient, I can clearly see how this early experience quite soon after diagnosis contributed to a great deal of health anxiety.
Although I initially tried to ignore what was happening to me and continued studying and working full-time at the same time as undergoing treatment (which for me was a combination of Rituximab and high dose Prednisone), this was a hugely anxious period in my life. I felt a strong sense of “Is this really happening to me?”. It was as if I was in limbo between the self I’d known for 24 years, who was able to graduate from university and work full-time in quite a demanding career, and a new, completely unfamiliar self who’d suddenly been told she had a life-changing illness and spent a lot of time in hospital feeling absolutely terrible!
Although I knew I was still “me”, I struggled to get my head around who this new “me” was. This is easily one of the hardest things I have ever had to do.