My immune system is trying to destroy me

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Reeanna Harrilal
Reeanna Harrilal

Advocate Reeanna Harrilal tells Karen Ann Monsy why living with lupus is like waging war with yourself - and how she managed to find purpose in pain

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Published: Fri 17 Jun 2016, 4:44 PM

Last updated: Wed 29 Mar 2023, 11:09 AM

Up until very recently, most of us had probably never heard of the chronic autoimmune disease called lupus (understandable, considering the disease is so rare that only an estimated 0.05 per cent of people in the world have some form of it.) And even if we had heard of it, chances were it was either through the TV show House (whose title character Dr Gregory House insists several times during the show that "it's never lupus"), or becaue we kept up with pop star Selena Gomez, who announced her own battle with the disease last year.

What's it like trying to live everyday with an immune system that's essentially trying to kill you? Reeanna Erani Yogeeta Harrilal is a 33-year-old native of Trinidad and Tobago, who first started experiencing symptoms of the disease as a child. After years of misdiagnoses - unfortunately, all too common in the case of lupus patients - a test for lupus confirmed she had the dreaded disease. The going was tough, but as she says, "I learnt that there is always opportunity in adversity." This is her story of how she learnt to fight back, start her own charity for the cause - and even win a national award for her work in the Caribbean nation where she lives and advocates for lupus patients everywhere.

SPREADING THE WORD: (left to right) Dr Gregory House from the medical drama House; Selena Gomez, who announced her diagnosis with lupus last year

"I just didn't want to know"

Lupus first came into my life at the age of 10. I wasn't diagnosed at the time, but that's when the symptoms began. One of those symptoms was that I couldn't go out into the sun, without coming down with fevers or heavy nosebleeds. But I live on a Caribbean island - I couldn't avoid the sun!

I started exhibiting a lot of blue-black marks on my skin: my forearms, belly, thighs. I know now that they were indicators of something going on in my blood, but my mom and I didn't have that knowledge back then.

To complicate matters, I was asthmatic - I still am; but, growing up, my asthma was really out of control and I had to be put on oral steroids. As I grew older, and entered adolescence, my fingers, knees, and joints began to ache as though I was 95 years old. I was only 15. Simple activities like running or lifting things became really difficult because my fingers would be very swollen. I was put on strong painkillers for the pain, and managed to pull along for a couple of years. But around 17, I got really ill - to the point where I was bedridden and would get really bad fevers every 6-8 months. The fever, however, always felt more like it was inside me. and it wouldn't break.

By now, I was being tested for all sorts of possibilities, from HIV/ AIDS, lymphoma and leukaemia to tuberculosis and even pregnancy (due to the abdominal pains - even though I assured the doctors there was no way that was a possibility!). It was a barrage of testing and I had to go through the entire process. One doctor did suggest we test for lupus and mixed connective tissue disorder. But there wasn't a lot of information about lupus at the time, in Trinidad and Tobago, where I lived. I remember going to the public library in Trinidad - because we didn't own a computer - going through the encyclopaedia and looking for lupus under the letter 'L'. And when I learnt that it was a chronic, debilitating autoimmune disease, I got so scared that I no longer wanted to know whether I had lupus or not.

Basically, if you have lupus, it means your immune system cannot tell the difference between foreign invaders and your own body, and therefore attacks and destroys your own organs and tissues in the process. The information in my hands said if I had lupus, I'd die in 10 years - and that was if I was lucky! I suddenly felt so cold, and all I said was: I don't want to know - because if I do, it's just going to kill me faster. I was a kid and it was too much for me. I wanted to bury my head in the sand like an ostrich, and hope it would all just go away.

Hitting rock bottom

Time passed, and I learnt to manage my pain with a lot of painkiller medication. One of my dreams was to become a journalist. At 18, that dream came true as I got a job, writing for a weekly newspaper; I even went on to work in radio and TV after a few years.

It was when I made the switch to work in television that things took a distinct turn for the worse again. My schedule had become extremely demanding, with my commute itself taking about 5-6 hours a day - that's not counting the 9-10 hours I spent at the job itself. It was too much for my body and, in 2006, I had an incident where I collapsed at work. During my hospitalisation, I had to fess up and tell the doctors that I'd been screened for lupus in the past. One thing led to another, and the confirmed diagnosis finally came out. My immune system was definitely waging war against me.

Things went downhill pretty fast. I ended up losing my job, my friends. Everyone turned their backs on me. I didn't really have a social life because I was terribly fatigued all the time - in the sense that I could sleep for 12 hours, wake up, and still feel like I needed to sleep for another 12 hours. If I complained of tiredness or pain, people always told me: 'But you look perfectly normal'. Well, lupus can be the 'look good, feel sick' disease, because there were days my feet were so swollen I couldn't get off my bed or walk; and others when my hands were so swollen that I couldn't brush my teeth or hair, or hold a cup of tea.

I reached a stage where I no longer had the zeal to live. How do you face the day, knowing that your own body is trying to destroy you? I turned to alcohol, started abusing morphine, attempted suicide more than once.

"Life is an opportunity"

I'm not proud of any of it - but I'm no longer ashamed of my story. I know what it's like to lose everything. A ball cannot bounce if it's in mid-air. And I believe the reason God allowed me to hit rock bottom was so that I could bounce back. My sickness, my trials, all the adversities I've been through - they were all, essentially, an opportunity. And that's what life is.

When I survived the attempt to take my life in 2010, I lay on the hospital bed with this clarity: if God had preserved my life, there must be a purpose for me... It was the last time I'd attempt suicide. I started searching for my purpose within myself. I wanted to let others with this disease know that they're not alone. Many lupus patients feel isolated, misunderstood, and cast down by society. But they're not crazy or imagining their sickness. Lupus is real. And, while most patients don't always look physically ill, inside their body, their immune system is waging a war. It's a fight for survival.

ADVOCATES: Reeanna (fifth from left) on the set of an official infomercial on lupus in Trinidad & Tobago

Working for change

In 2011, the Voice of Lupus Foundation was formed. And I've never looked back. The mission is to give this largely medically unrecognised disease a voice worldwide through aggressive outreach efforts, awareness campaigns, and social networking. We are trying to build support for the needs of those affected by this debilitating disease, and to elevate lupus to a place of prominence on the global health care agenda - because anyone can get lupus. It doesn't respect gender or ethnicity. But the symptoms can be misdiagnosed for many years. Delays in diagnosis and treatment can result in permanent organ damage or loss of life. What we're trying to do is change this through education, advocacy, awareness and action.

Do I regret having lupus? I wish I didn't have it, but lupus has been more of a blessing than a curse to me. It's through my charity that I have been able to make a difference in other people's lives. I've learnt to manage my illness too. It's been a struggle but I have overcome and only did so by the grace of God. Education brings empowerment. You must have knowledge of your disease and be honest with yourself.

Lupus is not a death sentence and there is hope. Something I always say is: I may have lupus, but lupus will never have me. I do not believe lupus should define who you are. Educate yourself and listen to your doctors. Sure, I'm still in pain - but it's become about finding purpose in that pain. And I would encourage anyone else with lupus to become their own champions of hope too. Lupus sucks - but we've got to fight back.

(Visit for more information or to get in touch.)

Take it from the expert

Dubai-based consultant rheumatologist Humeira Badsha says she sees lupus patients "every single day" at her specialist clinic - and they range from very young girls to adult men. "Lupus or systemic lupus erythematosus (SLE) is a rare, autoimmune condition, usually found in young women, that attacks the person's own body," she explains. "The name comes from the Latin word for wolf, owing to the disfiguring rashes that can make the face look like a wolf's."

Symptoms can include (but are not limited to) skin rashes, joint swelling, fevers, hair loss and organ failure - and it is because of the diversity of symptoms that the condition is often called 'a great mimic'.

Thankfully, where the prognosis was once bleak and patients diagnosed with the disease often died young, today, with careful treatment, the majority of patients can expect to live a normal lifespan. "There is so much more we understand about the disease today that help us to manage it better," says Dr Badsha. "With an early diagnosis and the right treatment, one can live a normal, fulfilling life."

The management of the disease isn't an easy one, the doctor agrees. "Treatment can be difficult, especially for young girls, as the medication tends to have a lot of side-effects. The steroids are lifesaving but they can affect weight badly. For this reason, some patients often choose halt treatment and try alternative therapies, only to come back with terrible outcomes."

Her advice for anyone recently diagnosed? "Keep a positive outlook, knowing you have to get beyond this. Lupus is not cancer. It is highly treatable, and very much possible to get your life back on track."

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