The invisibility of our condition is the most common challenge we face and a frequent topic of discussion in the lupus world. Sadly it leaks into all aspects of our lives, work, friendships, forming new acquaintances and would you believe it, even public transport. When your legs are shaking with fatigue or ribs throbbing with pain, try explaining it to the fit and healthy person taking advantage of the empty priority seat on a packed train. Without the visible explanation of a pregnancy bump, a stick or crutches, the expression on that seated persons face, is one of utter bewilderment, a sort of "do you think I was born yesterday?" glare. Then if you're truly lucky, they will utter those words all too familiar to us, infamous because of it's resonance in nearly every lupus sufferers life.
"But you don't look sick!"
Some of us do have the advantage of not having to use a physical aid and are nimble enough not to have to rely on them, thanks to some well practiced makeup tricks we can obscure those tell tale marks on our skin (most of the time) and so we then vanish into the complexity of the crowd. But sometimes our bodies don't care about appearances and we do require that allocated seat on a train or bus. It's a battle that all too often we are too tired to fight or explain and so we stand amongst the rest of you, our bodies screaming at us to sit, rest and we count each excruciating, everlasting minute until we can. Of course they would never know the difference, our face is a mask to the chaos employed inside and we blend in, keeping the pain silenced for the sake of appearance.
So with Lupus Awareness Month here in the UK upon us, I find myself asking do we sacrifice our stubbornness and our well rehearsed practices that retain 'normality' and show everyone the true face of lupus? To not wear makeup, to complain how tired and sore we are everyday to work colleagues, to relay in detail the list of medications we take to keep us alive, to take that seat on the bus and say "I have a complex illness that means I need to sit down, you can be ignorant and argue with me or take me at face value, be a good human being and let me sit down."
It's hard being misunderstood and terribly isolating. Us lupie's are all too aware of watchful eyes, multiple disbelieving questions designed to catch out a liar or exaggerator and misunderstood glances that can't comprehend why someone who looks so well, can actually be so ill and so conclude it must all be hogwash. When you are chronically ill you have to develop a chronically thick skin to the narrow minds and suspicious doubters, disturbingly unfair. You lead the harder, challenging more complicated life and you find yourself justifying yourself and validating your experiences to people who have barely had a bad case of the flu in their whole life.
When you say I have MS, I have CF, I have Cerebral Palsy... People understand the seriousness of it, even if they don't wholly understand the complexities of it, they know it's importance. When you say "I have Lupus" the common response is simply "What's that?" But yet lupus strikes more people than AIDS, Cerebral Palsy, Multiple Sclerosis, and Cystic Fibrosis combined. It's not my intention to deter from the seriousness of these lifelong debilitating conditions, it is by no means an effort to trivialise or compete, just to highlight the inconsistencies in awareness.
Advocates for lupus do an incredible job but aside from this we ask a huge amount. We ask for the understanding of a public blissfully unaware of such illnesses, a public that are bombarded daily on social media with requests to support charities and causes that often don't have a place close to their own heart and so we ask why is our cause so special? There are a few that will always open their hearts and minds to appreciate the suffering of others, value their good health and how lucky they are to lead a relatively uncomplicated life and are rewarded by perspective. But unfortunately there are so many that are disinterested in things that don't affect them, a "If it doesn't affect me I'm not really bothered" or "I'm alright Jack" kind of attitude... a result of a culture that feels they are worse off and their problems have more value than the next person. Simply, the only people that are truly aware of what lupus is are the families and friends of those who have suffered, actual witnesses to the damage and havoc it wreaks on the human body.
The acknowledgement, acceptance and comprehension of what people with chronic illness live with day to day will eventually come from an accumulation of factors, the hard work and determination of the dedicated charities, the ever expanding social media universe and the continuous support of family friends prepared to talk, explain and share experiences. But ultimately it comes from us as Lupus patients. By refusing to conform and hide behind a charade in order to avoid an uncomfortable conversation, by a short explanation to change an opinion not an avoidance of causing a fuss and by arming ourselves with knowledge to quell those inquisitive comments. We are walking awareness and hold the key to our diseases understanding in our own actions and our own honesty.
We shouldn't keep up appearances for consistency, but for our very own unique inconsistency, Lupus.
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