A little story about Sofia Lovi
17 Oct 2022
By Sofia Lovi
I’ve been diagnosed with Psoriasis & Psoriatic Arthritis at the age of 12 and recently with Fibromyalgia Syndrome.
I started my childhood with a stony road, it was very devastated and heartbroken when I heard there was no cure for this debilitating disease. What more when a girl who is supposed to be enjoying her life, dressing up for occasions, looking flawless. I didn’t get much of this.
I went into depression, started to ostracize myself, social life was completely taken out and change of my behaviour was drastic. My parents were equally emotionally distressed, excessive worries thinking how my future will be?
A strong support system is what everyone needed, for me, God has bestowed a beautiful yet supportive family. My family is my pillar, my energy, my happiness. Despite all the roller coaster ride, somehow my family will be able to pull me back to track if I derail.
From childhood to teenage and an adult, life has thought me the good, bad & ugly.
In 2014, I went thru a serious condition where I was bedridden for a year and alongside with other complications including a cardiac arrest.
I was totally helpless and rely on my family even bathing / eating. I was on wheelchair and equivalent to vegetable.
I reflected a lot about my life to the extend into suicidal thoughts, mind was running wild – an empty mind is devil’s workshop. I pray ardently and supplicating to HIM to give me another chance for me to do more better, serve people, social works which I love to do as my light within me becomes dimmer every day. Few months later, after some medication, things are changing, my skin is healing, I started to gain my stamina, slowing start walking.
I was thought by my parents since as a child that service to mankind is service to GOD, as a Baha’I , I always set Service as a centre of my life.
My advocacy journey started in 2015 when my first newspaper article was published on World Psoriasis Day and it created an impact where radio station folks would want to interview me, these opportunities came in seamlessly and then I realized people will listen when you start sharing. Then my advocacy journey started in 2015 and still going until today. One of the main platform is via Psoriasis Association of Malaysia – have joined them as a volunteer and holding a exco position – secretary.
I am very happy with the advocacy journey as I’ve reached most of the main frame media – TV/ Radia/ Newspapsers/ Magazine. I was even involved in journalist workshop where the room was filled with 10-15 journalist/reporters/camerans – the feel was so surreal and as though I was in a press conference for a movie release.
While I’ve covered most of the platform, I was wondering what can I do differently now, then my friend Nadeera (who has passed away last year) encouraged me to participate in one of the unique beauty pageant for differently abled people. I though I will never fit into a normal beauty pageant which has a high standard for ‘beauty’ hence, I’ve joined Miss Amazing Malaysia 2019 and begged the title.
I was never too proud about winning the title because my aim is to promote/create awareness to the condition and to make known to the world that people are equally capable despite the conditions that one is going thru.
Beauty was defined by the society, hence I would like to break the beauty standard and to be more inclusive to everyone. When the next day – in our main newspaper published ‘Differently abled banker wears Miss Amazing Crown’ – Woman with Psoriatic Arthritis among 13 finalist – became the headline. This is the kind of satisfaction that I would want to see.
On the same year, I’ve received another crown for top 100 beauty queens that have contributed to the social transformation- which was supported by Malaysia book of Records.
Again, all this will never happen without my family and also the believe within me.
Lately many are stepping up to create awareness, I feel the society is somewhat aware on the diseases but what I would like to create attention and awareness towards accessibility as I’ve seen many are suffering due to high cost for the medications. My experience in attending to IFPA conference was like an eye opening, I believe I do even more. Who knows, one day I can serve people not only from Malaysia but around the world too.
I would love to continue to contribute/ touch people’s life ,not only people who are living with psoriasis but with other various conditions too. Everyone need some to reach out to, someone to be inspired/ motivated or to draw their innate / latent talents, someone that need to be kind to, let me be that someone that you are looking for.
In the past, except my family, I didn’t see anyone as an idol, because there wasn’t any back then. Due to the misconception/ misunderstanding/ low self -esteem/ ostracizing community, no one wants to champion the cause. Hence many are still living in their shell with some much unspoken grieves within them. Where do they turn too? Ended living in a torture/ tempestuous life…
If I can inspire or give hope even to one soul, then this is my success!