“Your disease is something you have, not who you are.” “Don’t let your disease define you.” These are common phrases those with chronic illness often hear.

When I think about it the flip side of these sayings, though, I realise that chronic illness is a major factor in defining who I am. I may drive a certain car because it is easier to get in and out of, I chose a job which suits my physical needs and I wear certain shoes because they do not have laces, which is easier for my arthritic knuckles. However these are all external influences in life.

What I want to talk about is who you are as a person – what you value and what you stand for. This is when your disease can benefit you greatly.

Growing up I was a quiet kid; I didn’t get into a lot of trouble and I just sort of cruised through life. At the age of 12 I was thrown into a world of adults – doctors, physicians, hospitals. It was then I really came out of my shell and started to decide on the type of person I wanted to be.

I learnt to speak when I was in pain; to tell the truth and be honest. I learnt to look around and take notice of others. The haematology ward at Starship Hospital is on the same level as oncology so suddenly I learnt immense empathy for others who were worse off than me. I learnt to be agile – I still had to attend school, socialise and try to live the normal life my parents strove to provide for me. Lastly I learnt how brave I am, by being at breaking point numerous times and learning to fight back.

Most importantly I learnt that this disease isn’t the end of the world.

Take control

I decided very early on that I would surround myself with people who would support me. Living with an invisible illness means you have to rely heavily on your communication skills and intuition.

I can tell pretty quickly how someone will react when I tell them I have rheumatoid arthritis and lupus.

There are the people who tell me they know someone with arthritis (usually their Nana), others who quickly inform me Omega3 is the answer to all my woes, and lastly there are the people who feel immediate pity for me.

There is nothing wrong with any of these people; what I find most significant is how they react when I take the time to explain what rheumatoid arthritis really is.

Their openness to learn, appreciation for my honesty and acknowledgment of what I’ve told them is a great gauge for me to decide if these people are worth having in my life.

As a result I have created a great safety net of people in my life who love, understand and support me. I give them the same back – not always in the same way they give to me, such as helping me move house or coping with my numerous naps. Instead, I support them by being sympathetic ear to listen to their obstacles with a sense of humour and a kind heart.

Who am I now?
I value what my chronic illness has given me. The pain, fatigue and other conditions are not symptoms I wish upon anyone. But my outlook on the world, my resilience, my gusto and my empathy are traits which I have learnt through suffering and I wouldn’t change that for anything.

I don’t feel sorry for myself; I feel grateful for what I have achieved with what I have had to deal with. As Sam Berns says, “I try not to waste time feeling bad for myself, because when I do, there’s no room for happiness”.

Next time you’re feeling sorry for yourself, watch his video and aspire to be like this young man. At 17 he has learnt life lessons the rest of us could take a lifetime to learn.

So when someone says to me, “Don’t let your illness define you”, my response now is, “It does define me, but how it defines me is my choice and I choose a positive definition.”

Sam Bern’s philosophy for a happy life: https://ed.ted.com/on/Q0fBdrVh