Beating Lupus, a ghost disease

Taking a look back, I never imagined I would still be alive and breathing today. Over a decade ago, I underwent one of the hardest experiences I’ve had in my life, battling Lupus.

An illness that’s quite unknown to many, making it harder to for me and my family to understand. Like a ghost or an invisible disease, it was those days when the stigma for cancer, Lupus and HIV was prevalent compared to now that people who are sick are gutsier enough to talk about it more freely.

Back then I was still studying in college, trying to carve my path in the world. I didn’t know what I was set to do in my life yet. Though lucky enough, I already know my passions in life, initially singing then later on writing and photography.

It started with a simple headache, a fever, no doctor at first knew what it was – it was on and off. A lot of hospital rounds and one of our relatives from Pfizer recommended us to visit another doctor. We were doing rounds from St. Luke’s, The Medical City and Cardinal Santos. I was basically a stigma, or worse, a guinea pig.

The process was draining, touching the unknown. A group of doctors from Medical City collaborated, a team of six to be exact. A series of blood tests were done, every week, to once a month for a number of years. It was exhausting.

We were emotionally drained. Until one of my doctors, to whom I’m still thankful for, finally found out the I had Lupus. What in the world is it? I asked that time. It’s an autoimmune disease that basically attacks your white blood cells, the one that should be protecting you from diseases, but basically kills you in the long run when it hits major organs – from your heart to your kidney.

It was incurable. Only Marcos back in the days was known for Lupus. They even called it the “wealthy man’s disease”, heck, we were not an elitist family – with a treasure of gold to spend.

We only knew the surface of the gravity of what can happen. If you see me you wouldn’t even know I was that sick. Except when I was taking steroids which just made me so bloated. I took a break from studying then went to The Manila Times College and took Journalism.

I remember vividly how one professor was so negative telling I cannot be a journalist. But I told myself I’m already here so why not at least try to finish studying since I don’t even know if I’ll reach my 30s.

Back then, I wanted to do so many things in life. I wanted to sing then eventually found my passion in writing. I was lucky enough that my family was supportive but the outside world weren’t.

I had days when I can’t even move my fingers to stretch it, it was that painful. I had butterfly rashes (a reddish blush like symptoms on my face). I was losing my hair slowly, I cannot go to the beach to expose myself to the sun too much. I was psychologically drained.

What I did was I used my ability to write while studying to ask my editor when I was still an intern at the newspaper to let me cover all the Lupus related press conferences, to learn about it more. But they never knew I was damn sick.

I don’t want to be known as the “sick girl”. I didn’t want people to look at me with pity, to tell me you will not live because I already knew maybe I won’t. Once I was worse, it will be my heart, my kidney, my liver, my eyes or any of my vital organs.

What made it harder was seeing my mom deal with it, with pain but she hides it so well and that gave me strength to battle Lupus. For years, I will hear people tell me that I’m over acting, being too sensitive or just being paranoid that I have Lupus – but they never walked in my shoes. But then a friend pointed out to me, “you’re one of the most hopeful person I’ve met in my life and that is a great quality” – but to me I never saw myself that way.

Undergoing steroids treatment 2007-2008

There was a point in our lives, that we even went to healing masses or even faith healers. Yes, we were desperate. Until I found Father Efren Añez upon interviewing for an article for The Manila Times about Holy Week.

I’m Catholic but not religious and I’m more spiritual. I wasn’t a believer of miraculous healing back then. Who am I to believe when I cannot even fathom the world I was living in, and more so, be healed with a snap of the fingers.

I was wrong. My faith was not as strong as it is now. We attended his healing mass many times. Father Añez was one of the most beautiful soul I’ve ever met in my life, not because he’s a priest but simply because of who he is. We had the same background in writing and teaching.

The series of blood test was still ongoing, I was already graduating earlier. We also stumbled upon the story of Padre Pio of Pietrelcina. There’s nothing to lose to try. I wrote letters, prayed novenas and attended the mass at his chapel in Eastwood.

I had to believe in my faith, worse comes to worst at least I tried. Then in my early 20s, I was due for another Lupus blood test. It was negative. My rheumatologist was taken aback from the unfathomable result. So he requested to have it done in another hospital, St, Luke’s. For the second time it was negative. We were all bewildered as it was impossible for Lupus to heal, it’s incurable and basically, slowly kills you.

Until we finally accepted the reality, I was miraculously healed. I think this time I was already a proud degree holder of Journalism, ready to conquer the world.

A new chapter, living abroad and meeting a fellow Lupus patient

This experience had led me to all paths from media work in the Philippines to exploring international countries with AIESEC. But I never really told my story to all the new people I met just because I wanted to forget and heal, to not feel afraid.

After my first stint in Colombia to teach English to locals and before flying outside the Philippines again to work in Malaysia in a newspaper, I went to Macau to visit my sister.

There I met a close family friend, no one understood why we clicked when I wasn’t really his initial friend. I never knew he never told me that my family didn’t know he was diagnosed with Lupus when we met abroad. It was refreshing, surprising, how he was so vocal to me in 2012. I guess that’s what I needed back then, to find someone enough to understand what I was going through, without judgement and without fear. Sadly he only reached his early 30s but I admire him for living his life to the fullest, for being real, for being open.

Going back to media after four years

Working for an Aussie media company, I was very grateful to be back as a journalist. It took me awhile but now I’m here and I feel very blessed to be doing what I love the most once again.

In 2017, I was having weird symptoms again and we went back to my rheumatologist, Dr. Raoul Feliciano, after 10 years, who was so surprise to see me. I’m thankful to my nephrologist, Dra. Irmingarda Gueco, for referring me to him. They already chucked my records out the window when I returned. He ran the Lupus blood test and thankfully it was still negative. Heck yes I’m still a stigma to most of my doctors, I get sick but no symptoms are found until now.

I wish I had the same guts as our family friend did. Even today, as I tell my story, I’m so scared to be judged, to not be accepted as I’m no Selena Gomez nor the wife of Mark Villar, Representative Emmeline “Em” Aglipay-Villar.

But then if this story makes the smallest mark in this world, then it is worth it. Hopefully a few years from now people will find cure and be more accepting of Lupus – like how cancer and HIV are now.

Being miraculously healed has its downside, you always feel scared it will come back – the time for you to leave this earth. But that shouldn’t hinder you from stopping living your life to the fullest – as cliche as it sounds. I never did. I’m tougher than when I was younger, still a lot to learn, but like a phoenix from the ashes – this is another chance in living my life.

This is my story, I’m Remedios Lucio, a journalist, human, weak at times – but with an inspiring story to tell at 33-years-old.

In 2019

This year, I asked my mom if this would be something I can finally share an grateful for her all throughout support.

I am also thankful to fellow journalist/vlogger Christine Bersola-Babao, if she could see if this is even worth writing about, I was also very inspired by Wil Dasovich and all those people who had the guts to talk without fear.

Since coming home, I took a rest from media work and teaching to work around related industries from PR, Marketing to Entertainment. I met fellow journalist Julius Babao again after a long time who made me realize to give media work a try again, when I was about to quit. (Read my blog on how he inspired me).