Living with Lupus

Date: 
Wednesday, May 29, 2019 - 10:15

Lupus is the uninvited guest at a dinner party. It is the shadowy figure lurking over your shoulders until one day it stands into the light for all to see. At least, this has been my story. Hello everyone, I am Reeanna Harrilal, a lupus sufferer and president and founder of The Voice of Lupus Foundation. I am a warrior who has battled lupus and is determined to win. You see, some battles do not involve guns!

Systemic Lupus Erythematosus — simply called lupus by most — is a chronic, life-threatening autoimmune disease that can affect any part of the body — vital organs like the kidneys, heart, lungs and brain, the skin and the joints can be compromised. It can affect any organ, anyone and anywhere. When you have lupus, your immune system rages war on all your body’s organs, leaving you in severe pain and in worse cases, facing multiple organ failure. On average, it takes a person six years from the onset of their symptoms until they receive a lupus diagnosis. That’s six years too long. And in that time, the disease can do so much damage. We must do better. Lives depend on it.

Lupus is more pervasive and severe than people think and has a devastating impact that the public doesn’t realise. In fact, our research shows that a staggering two-thirds of the population knows little or nothing about lupus. While there are no official statistics available on the number of people living with lupus in Trinidad and Tobago, the Voice of Lupus Foundation’s internal patient registry contains over 800 patients. These are patients whom the organisation has interacted with and provided assistance to over the last eight years. Globally, there are over 5 million persons living with lupus.

Lupus knows no boundaries; it affects people of all nationalities, races, ethnicities, genders, and ages, and can affect any part of the body in any way at any time, often with unpredictable and life-changing results. Symptoms of the disease include chronic fatigue, severe joint and body pains, organ failure, skin rashes, hair loss, depression, mouth ulcers, and photosensitivity, especially to sunlight. Knowing all we can about lupus can help control its impact.

As I write this, I think of the nursery rhyme entitled: “The Itsy-Bitsy Spider”. Some of you may think I have gone off my rockers, but believe it or not, this simple nursery rhyme brought deep revelation and insight. You see, I am that “itsy bitsy spider”…now, I know I am overweight, but work with me here! The nursery rhyme reads: “the itsy-bitsy spider crawled up the water sprout/down came the rains and washed the spider out/up came the sun and dried up all the rain and the itsy-bitsy spider crawled up the sprout again.” In life, we will face many storms and heavy rains; but I guarantee you, the rains and storms will fade. Our storms and heavy rains come in various forms; I can only mention my own: living with lupus. At the time of diagnosis, I felt hopeless, confused, misunderstood and I abhorred myself. I battled with depression. I was grieving for the person I once was before lupus.

Little did I know that these storms would teach me how to fight; though my heavy rains sought to destroy me, I found purpose in my pain and suffering when I was directed by the Holy Spirit to start my NGO, The Voice of Lupus Foundation in 2011. When God places purpose in you, no storm or rain can stop you. One thing is sure: In this life, we will face many storms, but let’s remember that even the itsy-bitsy spider, got back up and crawled his way to the top! Be your own hero!

Today, I run an organization endorsed by the World Lupus Federation, Lupus UK, and Lupus Europe. I have won an international award for advocating for others and I am the recipient of the National Youth Ally award. Through our efforts, the VLF provides education and services to people living with the disease, and advocates on their behalf. We work to inspire people to help raise awareness and secure urgently needed funds for advocacy, awareness and support services to end the brutal impact of lupus. The VLF’s focusing efforts are in three critical areas: awareness, empowerment, and advocacy.

Lupus is a daily struggle just to get off of the bed, most patients can relate to living in indescribable pain, depression and constant fatigue. Most of us go through physical changes such as weight gain owing to the side effects of our medications especially steroids and disfiguring scars resulting from our flares. No two lupus patients are the same, so our treatments vary depending on our symptoms. It must be noted that the treatment for lupus can be worse than the disease.

The bad thing about lupus is because you do not look sick, you do not always get the understanding, compassion, and support that you sometimes need. It is no surprise that those who have been diagnosed with lupus will inevitably be told at some point, “Oh, but you don’t look sick.”Many of you think saying this is a compliment. As sweet as the attempted nicety may be, often it’s received more like a backhanded compliment to the person ill. Don’t get me wrong, it is great to be told from time-to-time that my outsides don’t match the hot mess of my insides. However, somehow, someway, it is incredibly invalidating. It makes one feel like a counterfeit. A fraud. Why do I need to prove to you that I am in fact sick?

More and more, I feel like lupus individuals are forced to allow their illness (or illnesses) to dictate not only what they look like, but how they present themselves to society. As if it isn’t enough to be constricted by pain and fatigue, we have to hand over the reigns of our physical appearance as well. Why should we give lupus the right to control our confidence, our image, our self-respect, and our value? Just remember that not all disabilities can be seen. Lupus is just one of many invisible disabilities out there.

So, I ask. What is “sick” supposed to look like? Lupus comes with good days, bad days, and in-between days. You can have lupus and be in a wheelchair; you can have lupus and enjoy running. You can have lupus and have a butterfly rash; you can have lupus and have clear skin. You can have lupus and have shiny hair; you can have lupus and have no hair at all. I refuse to sit back and allow lupus to take hold of me. I am a woman on a mission. A mission to live, a mission to touch and transform lives. A mission to give Lupus a Voice! Will you support my mission?

To learn more about Lupus or The Voice of Lupus Foundation, feel free to contact us via our email address: [email protected], office line: 1868-327-0220 or visit our website at www.thevoiceoflupus.com or find us on Facebook: https://www.facebook.com/thevoiceoflupus/.