Olivia, aged 26: I currently have my own blog about my experience of living with Lupus and would love to share my journey of navigating this illness with others. I am really passionate about spreading awareness about how Arthritis impacts younger people.
Yes, I know I am young and to you I look perfectly healthy sitting inside my car. I can see it in your eyes – you have already judged me before I’ve even attempted to move.
I bet you didn’t know that I get nervous butterflies every time I pull into that park. I question whether I should park further away; cause myself more pain but avoid people’s awkward stares? I question whether someone needs this park more than me. Am I in enough pain to use it? Do I have the emotional capacity to deal with the stares and sidelong glances? I know you don’t mean to stare or judge but I can feel your eyes on me. “What is possibly wrong with that girl?”
The truth is that parking close is not a perk and it’s not something I enjoy. To me it means that today I cannot blend in; that I cannot walk far without severe pain. I’m already pushing my boundaries by being out and about.
So, random stranger, just for the record, I was not ‘abusing’ the use of my permit. I saw you lingering around your car. I could almost hear your words before I had a chance to open my car door. You looked away once you saw my noticeable limp and the effort it took to get out of the car. Once you could see me struggling to walk, you got into your car. It was like I suddenly gained your approval once you saw my limp. My heart sank; I was judged yet again.
Do you know what made it worse this time? You were parked in the disability car park next to me! Were you in pain? Had you just had an operation? What struggle did you have to leave the house? Not that any of those questions are my business! Why did you think it was okay to look at me with judging eyes when you needed the very same park? My permit was visible so surely that should have been enough.
You only saw me for a tiny snippet of my day. You didn’t see me struggle to get out of bed in the morning. You didn’t see me make the decision to push through this pain and go to the movies. You didn’t know that I had to choose between the enjoyment of getting out of the house and spending time with my husband, in spite of the pain, or staying at home and missing out on yet another activity. You didn’t see the medication I had to take to ensure I could remain as comfortable as possible. You didn’t hear me ask if I should use my disability permit today and you didn’t feel my stomach drop as you stared at me.
To get a mobility parking permit in New Zealand, you need to fit the following criteria and have it signed off by a doctor:
- You are unable to walk and always require the use of a wheelchair, or
- Your ability to walk distances is severely restricted by a medical condition or disability. If, for example, you require the use of mobility aids, experience severe pain, or breathlessness, or
- You have a medical condition or disability that requires you to have physical contact or close supervision to safely get around and cannot be left unattended. For example, if you experience disorientation, confusion, or severe anxiety. (Sourced from CCS Disability)
People generally seem to think that in order to use the park you need to be in a wheelchair and they are not aware of the other two criteria. Even on crutches, I have been rudely questioned by complete strangers about my eligibility to park in the mobility carpark. Society says young people aren’t supposed to get sick, right?
I have my own personal rules: I will not park in the bigger parks, as these are for people who need the extra room to get equipment or wheel chairs out. I will always look first for a close park that is not a mobility park and use that one. Lastly, I will only use the park when I feel I ‘really’ need it because of my limited mobility. It is never my first option.
I think I need to make the following statement very clear: Please remember that not all disabilities are visible and that young people are not immune to the effects of ill health.
I think it’s great if you question people who park there without their permit on display but I really think you cross the line if you start questioning when they have a clear permit on display. It’s not your place to judge! I might look healthy to you but you do not know the pain that I am feeling inside. Also I do not have to disclose my health condition to you so you can determine whether or not I can park there. I have already done this with my doctor. The mere effort of getting out of the house is hard enough so please don’t make it any harder!
Instead of those blatant stares can I please just have a smile to celebrate the fact that I made it out of the house at all!
“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!