“That is all I want in life: for this pain to seem purposeful.”
“Your daughter has systemic lupus erythematosus.”
It was six simple words, strung together in a sentence that would dramatically change a young family’s life, as they nervously sat in an exam room at Starship Hospital 23 years ago.
I believe all parents have dreams and hopes of how their young child is going to grow up in this world. Will they be good at sports or singing? Will they be tall like their mother or have their grandfather’s cheeky smile? Right-handed or left-handed?
My parents would NEVER have imagined sitting in a specialist’s office being told that their 3-year-old daughter had a chronic illness that would dramatically change her life path. For one, the odds of not being diagnosed with lupus were dramatically in my favour. Research indicates that lupus is commonly diagnosed between the ages of 15 and 35 and is more common in those of non-European descent. Of course I have learnt now that I seem to be the exception to that rule.
My life so far has been anything but easy. I am not going to sugar-coat that for you. Every day holds a new challenge to overcome and lupus always has a tight grip on me. From the age of three I had to learn to start taking many medications, and the innocence of being a child was replaced with the uncharted territory of the medical world. My wellness and ability to function were based on blood results and the movement of my joints. Learning my ABCs was replaced with learning about SLE (systemic lupus erythematosus).
I do not personally remember the day of my diagnosis or the path we took to end up there. I do not remember a life without lupus; a life without pain. My parents, of course, vividly recall the dramatic change in their once bubbly, bright, vivacious young daughter. Up to just before I was three I was well and healthy. I reached all my milestones and even began to walk at nine months. I am told my parents became concerned when I began to cry if anyone tried to pick me up or touched my joints; I reverted back to crawling most nights; I lost a dramatic amount of weight and my body became covered in a rash. My joints also looked noticeably swollen and red. Before their very eyes, my parents saw their young girl go from a happy, smiley and content toddler into grizzly and unsettled one. Lupus can be very difficult to diagnose and many people go for years without identifyng the disease. In my case, we obtained a diagnosis pretty quickly due to my blood markers clearly indicating the disease.
When I tell people I have lupus I am often met with confused faces. I can hear the question before it leaves the person’s mouth, “But what is lupus, Liv?” I remember being in the emergency room once and my nurse saying to me, “I don’t know what lupus is but I remember hearing it mentioned in an episode of House (TV show).”
This is how I would explain lupus in my own words: Lupus is a chronic autoimmune illness that can affect any part of the body. For some reason my immune system has become overactive and instead of fighting harmful viruses and other foreign invaders like it should, it attacks my healthy tissues. It is almost as though my body is allergic to itself. Due to the fact that lupus can affect any system in the body, patients rarely experience the exact same symptoms. One patient’s kidneys may be affected, whereas for another it may be their joints, and for the third, their skin. I live in constant fear of which system is going to be lupus’ next target. For these reasons, lupus is often referred to as the ‘great imitator’.
Twenty three years after my diagnosis, lupus is still throwing my body into battle mode. I am still searching to find the right combination of medications and spend way too much time in doctors’ waiting rooms. Every day there are new obstacles and challenges to overcome but these always bring new learning and continue to shape me into the person I am today – someone who knows great pain but also experiences immense joy; a person who has to live with limitations due to her illness but does not give up on living a fulfilled life. Through the tough times there are always blessings – sometimes we just have to look a little harder. My greatest blessing is the incredible people I share my life with. Lupus is strong and powerful but the fierce love and support I receive from my family and friends is always much stronger.
Arthritis New Zealand has been an influential part of my journey in learning to live with lupus. When I was younger, my Mum would attend support groups and even though she was the only one with a young child with lupus, she found comfort in being able to talk to others. As a family we have collected during appeal week and continue to do our part to spread awareness. I have featured many times in our local newspaper, spoken to support groups and also shared my story for the Arthritis NZ donor mail. In 2010 it was an honour to be awarded the Arthritis NZ Young Achievers Award. That night is still one of my most precious memories. All these moments have given me the courage to stand up and tell my story.
How nice it would be to spread enough awareness about the fact that young people DO get arthritis, so that we no longer have to hear the words, “Oh yeah, my grandma has that too!” Until that day I will continue to openly share my story in order to help others and for the sake of the little girl who used to do everything in her power to hide her illness from everyone. I am no longer hiding!
So buckle in because it’s a bumpy ride!