Will the real me please stand up?

A self-discovery journey after chronic illness

by Hayley Mills

From being a child, society imposes on us what we should do in life. Finish school, go to college, uni, find a good job, have adventures, settle down, have a family, the list goes on and on and on.

Growing up I did meet some ‘expectations’. I went to uni and had many different jobs over the years. However, since becoming chronically ill I have had a lot of time to think. I have realised that I’ve spent the last decade of my life more concerned with how society views me than how I view myself.

What happens when for whatever reason, you are no longer able to work? Maybe due to poor mental health or physical health. What happens to your sense of self then?

Because I can’t work, do I not matter anymore?

If you had asked me about myself a couple of years ago. I’d  have told you I worked in a supermarket, volunteered on a helpline, I had lots and lots of friends and was always ‘on the go’. In fact I could have given a long list. If you asked me recently I’d tell you I have a beautiful dog called Max, and that is all I can think of.

I’ve read so many articles online saying people on sickness benefits are scroungers, lazy and playing the system. These articles and the negative opinions of society in general have had such an impact on me. Not only am I in constant pain, suffer from debilitating exhaustion and low mood, by many I’m viewed as worthless. This needs to change. I’m kind, loyal, loving and funny. Do these things not count? Because I can’t work, do I not matter anymore?

I find it beyond frustrating that nobody really tells us how important it is to know who you are on a deeper level. There’s so much more to a person than the labels and expectations society places on us. Your self-worth comes from much more than your level of education and employment status. Your self-confidence should come from having pride in yourself, regardless of others’ judgements. But nobody teaches us this when we are little. Surely by teaching children at a young age to love themselves, that they are unique and important, will go some way to reducing stigma and judgement. Hopefully even improve our mental health.

12 months ago I was diagnosed with Idiopathic Intercranial Hypertension, which basically means there’s too much pressure/fluid on my brain. Following this I had 2 brain surgeries a shunt fitted  (it constantly drains the pressure/fluid) and a bleed on my brain. Shortly after this I was diagnosed with fibromyalgia.  Both of these conditions cause me extreme fatigue, a tremor and constant pain.

Becoming ill has changed my life a lot, but it also means that I have time to find myself aside from labels and judgement

I’ve found myself on sickness benefits, unable to work and sometimes even be part of the world. Some weeks I see nobody. Spending 24 hours a day, 7 days a week alone. Alone with a person I don’t know and I’m not even sure I like. I’ve tortured myself with the same 3 thoughts; who am I, what do I stand for, and what do I do now. Since becoming ill, I’ve become very isolated and all the things I used to value as being part of my identity have gone.

How do you begin finding yourself again at 28 years old?

I’ve found myself lost.

It’s taken me a very long time and going to some very dark places to realise that so many of the things society values actually don’t define who I am. What is my favourite colour? My favourite book? Singer? Film? What do I enjoy doing? Surely these things are more important.

So I’ve decided I’m going to spend the next couple of months learning who I am. Becoming ill has changed my life a lot, but it also means that I have time to find myself aside from labels and judgement. A lot of people don’t get that opportunity.

Oh… and my favourite colour is purple, my favourite book is ‘A street cat named Bob’. My favourite singer is James Arthur and my favourite film is Bridesmaids. What do I enjoy doing? I’m still working on that one. But the next time somebody asks me about myself I will tell them these things – and of course about my special boy Max.