The Painful Journey of a 23-year-old Introverted Girl Living With Systemic Lupus Erythematosus (SLE)

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This is a story about me, the painful journey of a 23-year-old introverted girl who loves dancing and living life in her own world. Maybe this wouldn’t be the worst experience you’ve heard, but it’s about how I had to face it as a person, especially for my gender in this society.

In 2016, I moved to India with mum for her business, a new environment which I wasn’t used to.

Unexpectedly, because my body wasn’t used to the different weather and foods, I started developing rashes all over my body, with excessive pimples on my face and red patches on my thighs and belly.

The doctors I visited in that city told me it’s environmental changes and sent me back with only a bunch of creams.

As time passed, the rashes turned into ringworm, a kind of fungal infection that’s contagious and very itchy. I used different kinds of creams I got from the pharmacy —  I found that all the creams doctors gave me were useless.

Whenever I come back from India for visa purposes, my grandmother would apply some herbal medicine on my body, where you feel your whole body is burning.

People said it was my own fault

People around me said it was my fault because I wasn’t taking care of myself. It could be the lotions I was using, the creams I used before, or a lot more. Out of embarrassment, I started covering myself with cardigans, jackets or sweaters.

As a girl, a skin condition is a bad thing to get on your body, because people think you are a person with poor hygiene who brought all this upon herself. Other things they said:

“You are dieting so it’s an excuse for you to not eat.”

“You dyed your hair, and that’s why your hair was thinning.”

“Cold weather caused your joint paints.”

“Lack of water and bad products developed your dry skin.”

“It’ll go away by time.”

Once, a policeman from India asked me if I was a drug addict, upon seeing my condition.

And the list goes on.

In a year’s time, I suffered extremely dry skin from neck to toe. The only time I never felt the pain on my body was the time I was sleeping. If I touch my body with a little force,  I would bleed.

One time, after using a coconut oil soap for my body, I sat in a chair crying for almost 30 minutes for this pain to go away. All I wanted was to get back to my normal self.

Just as I returned to Malaysia again, I went to a skin specialist, and the doctor gave me an antibiotic injection. In one week after I went back to India, I felt elated at seeing my skin getting back to normal. I felt my skin for the first time without any rashes, ringworm, patches or anything. For the first time after a long time, I felt relieved.

I thought everything was fine, but then, in less than a month’s time, my skin started to crack like a river out of water in summer time.

My skin was a major source of embarrassment 

Imagery aside, it wasn’t painful as it was when I had dry skin. But it was an embarrassment. I wasn’t scared of what was going on, but the fear of judgement I might get from others.

In the current society we live in, being different from the Typical, the Norm, is a sin. According to others, if anything occurs to you, either mentally or physically, you did it to yourself — as if you did something wrong, and that’s why you received this punishment.

Every time we visited the doctors, they would send us back saying: “It’s a common reaction to the weather.” By that point we just gave up and decided to let myself heal on my own.

Even my family thought it was my fault, constantly diagnosing me — it could be the product I used, or lack of water, or maybe not taking care of myself., etc. But I knew I was doing all I could do to get back to normal.

I tried everything I could — visiting different hospitals, clinics, and pharmacies. Nothing helped.

I didn’t realize it, but I was having changes in different ways too, not just on my skin. I would get very tired whenever I do something. I couldn’t eat much, I couldn’t lift things, my hair was thinning, and pretty much everything which we all had reasons for everything.

Being a 21-year-old girl at the time, in that body, all my fears were about how people were gonna view me. Is this my fault? Maybe I’m weak? Or maybe I was a sinful person?

I tried homeopathic treatment

Someone in India recommended us to try homeopathic treatment. It has a strong history of use there — I had a strong belief it might cure whatever that’s going on with me, like it had done for  many.

When I went there, the practitioner told me it’s due to the uncommon weather and foods here. He gave me four different types of pea-sized white pills and a lotion to apply all over my body.

I started taking those, and in a day, my skin started getting back to my usual condition from long ago. After a few years of living with my condition, I could see my skin very clearly.

It didn’t break when I touched it, and I felt smooth all over. I jumped in joy and told my mum: “The doctor made it, he did miracles!”

And yes, I thought it was the end for this. But it came back, stronger than ever before.

I believe in a saying: “Life buries you in deep darkness in order for you to bloom into a beautiful flower.” Unfortunately it wasn’t deep enough for me, I may have needed to be buried even deeper.

[My mother helped me mentally; she would listen and be there for me.]

After a whole year in India on my mum’s business visa, I had to fly back to my country again. I was so scared about how the people I knew would view my condition —  are they gonna ask? Are they gonna judge?

At that point, I couldn’t even bring myself to be around other people, from the fear of my hair falling all over.

Upon seeing my face, my little brother didn’t judge me, but urged me to try seeing a doctor in Subang. I had no hope, but he forced me to go.

I Finally Got The Correct Diagnosis 

As I went to a clinic in our neighborhood with my dad, upon resting his eyes on me, the doctor confirmed something very bad was going on. As I explained how things were in India and what doctors said, he told me I had to do a blood checkup as soon as possible.

After giving blood in a different clinic, the doctor remarked: “Those are butterfly rashes on your face. I suspect it might be an autoimmune disease.”

For the first time ever in my life, I heard something like that. Autoimmune disease? I wanted to Google it, but I just wished it’s nothing dropping the thoughts to know.

In three days reports came, and the doctor explained to me and my dad that it was SLE (Systemic Lupus Erythematosus). It was very, very critical and I needed quick medical attention.

What’s SLE? I was so confused, I didn’t know how I should feel, because I had no idea. So that’s the reason I had all these things in my body and why it’s critical?

And I was immediately referred to a hospital in Subang Jaya, SJMC. Seeing my reports, doctors wanted me to get admitted then and there. And they needed to do all kinds of tests on me.

And that’s when I finally KNEW. Finally, I had collected all the information I ever needed. I got answers for every single question my mind had. And you know what’s important? IT WASN’T MY FAULT.

What Systemic Lupus Erythematosus is

SLE is a chronic inflammatory disease of an autoimmune nature that can affect the skin, joints, kidneys, lungs, nervous system, and/or other organs of the body. The cause of this disease could be genetics, environments or hormones. And it’s incurable.

Getting all my tests done, the doctor told me how bad my flare-up is. I needed to be in constant medication in order to control my SLE. Luckily, all my organs weren’t damaged as badly as they thought and I still can get back to myself and lead a normal life with certain conditions. However, my thyroid and arthritis were very bad. I had lost all the protective layers of my skin.

I learnt everything possible about myself and this disease to tell others I wasn’t the cause for what occurred me. I realized I lost almost 20 kgs. I was 55kg back then, and when I checked in that hospital, I was just 35kg. The slim girl who I was craving for when I was healthy, existed now — but I didn’t feel happy seeing her.

The doctors put me on certain medications which made me tired and drowsy. Going back in a week’s time after my discharge, I just couldn’t accept why. Why me? What have I done?

My fears of life started growing bigger. And being on medication made my anxiety worse which led to bad hallucinations. The doctor told me this was very rare for the dosage I’m taking, but it was the worst time in my life.

I started hallucinating all the fears I ever had in my life, which I couldn’t handle, living in that body with that mind. I would scream things in my hallucinations.

If not for my family, I would’ve ended my life

My body got better by time, even though I was completely limited and needed to adapt to my new norm. My ability to perform is half lesser than others due to my arthritis but I am happy I’m getting better. I can get very tired by doing something or flareups when I’m under the sun.

I always try hard to keep my flares down by taking healthy foods, having good rest and sleep and most importantly I listen to my body. Due to medications I have a very low immune system which makes me sick very quickly. But I try my best to stay protected.

I get all the love and support from my family, especially Dad and my brothers being with me. They took care of me so well, bringing me everywhere with them, motivating me, and helping me with my depression I was going through.

Despite everything, with the love I get from people I keep close, it made me fight this battle of mine. I started to accept what happened to me little by little. Most importantly, I believed in me.

A few weeks back, my doctor told me he was very happy with my results. My thyroid issue was gone, and my SLE was almost controlled. This happened in just a year and half after I had been told I was in very critical condition.

Even when life put me in that deep darkness, it gave me a second chance to love myself back and appreciate what I’ve been given. Sometimes I get so depressed and feel so worthless.

But whenever I turn back, I see a very strong girl standing behind there who wants to breathe and live peacefully with an acceptance of life. I found someone who really cares for me, and accepts me without any judgements for the way I am, giving me the confidence and hope to run forward.

Believing In Myself Was How I Crawled Out Of That Cave

Now if you ask me, I’m enough with what I’ve been given. I changed my life by changing the way I look at it. If I never believed in myself, I wouldn’t have been here in the place I am now. Even though I can’t go back, I found peace here.

  1. Remember, love what you have. Whether it’s an object, or a person or your own self, cause you don’t know the value of something until you lose it.
  2. Your health is your wealth. Take care of yourself.
  3. There are no certain rules to being a human. You are unique in your way. Love your body and it will love you back.
  4. Educate yourself with knowledge not judgements or opinions.
  5. Your worth is not your look but what you have inside.
  1. ALWAYS follow your heart and never let anything stop being yourself.

Thank you for being there for me, my family, it’s always appreciated. And I’ll stay strong no matter what life throws at me in future.

Because I know how beautiful life is and it’s worth a fight, and I’ll never let myself give up on my dancing again.

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