After months of not knowing what was happening to her body, she got onto a plane and flew thousands of miles, hoping to finally get a diagnosis. What had started out as some skin discolouration had turned into painful and burning skin that left scars all over her body. Over the months, the pain had seeped through to her joints and affected her ability to walk some days. This wasn’t supposed to happen. She was young, a newlywed and expecting her first child. She had a plan, and lupus wasn’t part of that plan.
In May 2015, things were going well for Olivia Clarke. She had just moved to the Las Vegas, Nevada, USA, to start a life with her new husband. A little over a year later, Clarke discovered she was expecting. She was elated, but soon began to experience health issues that threatened her life and the life of her unborn child.
“I started to develop what doctors first said was melasma. My nose started to get darker and I started to see discolouration inside my ears,” Clarke told The Weight She Carries. “But I was told that this was normal because your skin changes when you’re pregnant.”
As her pregnancy progressed, stranger symptoms began to occur. One day she woke up and her right hip was locked, making her unable to walk.
“My face got worse and I couldn’t put make up on because my face hurt so much,” Clarke said. “All down my spine it looked like I had acne, and eventually I had discolouration over my entire body.”
Still, doctors couldn’t determine what was wrong.
Clarke, who is Canadian-born, returned to Toronto to seek medical treatment from her family doctor. Following a series of tests, Clarke learned that she had lupus.
“It wasn’t discoid lupus. It was cutaneous lupus erythematosus (CLE) – the kind if lupus that attacks the skin. So basically, my blood cells were fighting my skin,” she said.
Lupus is an autoimmune disease that causes a person’s immune system to attack the body and destroy health tissues and organs like joints, skin, kidneys, blood, the heart, and lungs.
It is estimated that 5 million people worldwide have some form of lupus. Ninety percent of those living with lupus are women. Women of African decent have the highest rate of incidence.
Once Clarke was diagnosed, there was immediate cause for concern.
“They were afraid that several things could happen: the tissue around my heart could harden and stop my heart from beating, or my lungs would fill up with fluid,” Clarke said. “And then there was the baby – the lupus could go through my placenta and affect my baby.”
“I had to purposely say to myself, ‘God will never give me more than I can bear. And He knows the outcome already, so I can’t worry about things I don’t know.’ I had to focus on the present. That meant that in the present, I had to make sure I was doing everything I needed to do to make sure we were okay.”- Olivia Clarke
By this time, she was about six months pregnant. With little time to digest the news, a team of specialists was quickly assembled, and Clarke’s calendar soon filled up with numerous medical appointments.
“I had a cardiologist, a rheumatologist, a dermatologist and a high-risk pregnancy. So every week I had to go to the doctor – twice a week to do monitoring to make sure my heart was pumping regularly,” she said.
Although her condition was being monitored, Clarke’s doctors were concerned her baby would not survive.
There was medication she could take, but it was risky. It was strong and would travel into her baby’s system, so Clarke chose not to take any medication.
Instead, Clarke clung to her faith to get through her darkest days, knowing that this was a battle that could only be conquered through prayer.
“I remember I went to the doctor one day and he said, ‘There is a high chance your baby won’t make it because usually when people have lupus, the miscarry right away. And in your case, any future pregnancies could actually be worse.’ “I took in the information, but I thank God for my husband. He is a pastor and has an understanding of how God works. He has seen things, and I have myself, but having him there helped me get through it,” she said.
Clarke’s entire family covered her in prayer, and although she was going through a flood of emotions, she knew she had to stay positive for the sake of her unborn child.
“I could have said, ‘God, I married a pastor, I was in the choir…on praise teams, I stayed in church when my friends all left…why would you do this to me?’ But He knows the relationship I have with him and that I would still love him despite this,” Clarke said. “It was my ‘Job experience.’ God knows His children and how far they can go.”
“At the church I was attending in Vegas, there was another woman who had a lupus flare-up at the same time as mine. She had also found out that she had lupus when she was pregnant 19 years earlier. She passed away in 2017 from a complication. Her kidneys had failed. Someone asked me, ‘Aren’t you afraid that you will die, too?’ And I said to her, ‘I would be afraid if I didn’t know God, but I know that He trusted me to go through this.’” – Olivia Clarke
When the time came to deliver the baby, the doctor who was measuring her to assess how dilated her cervix was told her that there was a chance her baby could be stillborn.
“When he said it I just dismissed it,” Clarke said. “My husband looked at me and then looked at the doctor and went outside with him. In retrospect, I realize that I should have lost my mind. This is when I knew how strong I was.”
Shortly after, Clarke gave birth to her son, Myles.
She was overjoyed and relieved that he had survived, but the fight for her life wasn’t even close to being over.
On the day Clarke delivered her baby, she weighed 160lbs (72kgs), the next day her weight dropped to 125lbs (56kgs).
“My body went nuts and I was just dropping weight like crazy. I would look at myself and say, “This is not me.’ I wasn’t sleeping because I had a baby and the worst thing you can do when you have lupus is not rest well,” she said.
Clarke started medication right away and made the conscious decision not to breastfeed her son.
“In essence, it was cancer medication and you don’t want to breastfeed a child with that stuff. So, I decided not to breastfeed,” Clarke said. “I had to take steroids for a while, but I didn’t want to stay on them for too long because steroids can really wreak havoc in your body. So I took it long enough for it to calm my flare up.”
Clarke switched to a raw diet and began drinking alkaline water. With time, she began to feel better, but her skin still looked the same – it just stopped being irritated and stopped peeling.
Clarke realized that she need to accept that the scars were here to stay.
“Mentally it was a struggle because I was used to seeing myself look a certain way. I never had acne before, so I went from having really nice skin to this,” she said. “But I thank God for my husband because he tells me that I’m beautiful regardless. He says even if I had no nose, I’d still be beautiful.”
Lupus has changed Clarke’s life and she has had to adjust to accommodate certain limitations. She cannot enjoy the sun like she used to because her skin is sensitive to light. Vegas is notorious for its sweltering heat, making it difficult for Clarke to be outdoors for long periods of time during the day.
“I don’t really go outside, and if I do, it’s usually at dusk,” she said. “I still wear shorts because I don’t care if people don’t like my skin, but I usually carry something that covers my skin and I wear a lot of sunscreen to protect my skin.”
Being a pastor’s wife comes with a set of responsibilities like traveling and greeting people. Initially, there were times when it was difficult for Clarke to go out to church events and gatherings because people would stare. But she never let it stop her from fulfilling her role.
“Once I see people staring, I just explain that I have lupus because I know they are wondering but just afraid to ask,” Clarke said.
Having the ability to see the rainbow in her struggle has helped Clarke open up about her condition and share what she has survived. Myles, now 17 months old, is completely healthy. And Clarke has learnt a valuable lesson through her pain.
“This experience has taught me to be patient and not to be ‘Type A’ about everything. I couldn’t tell my body to move my leg when I couldn’t walk. I couldn’t tell myself, ‘fix your skin’. I had no control over my body,” she said.
Her battle with lupus has sparked a passion for health because Clarke now realizes that so many ailments can be fought with food. She is also determined to help raise awareness about lupus because many people may have lupus and not know it because the symptoms are often subtle at first.
At first it was difficult to share her story because not only did she fear she wouldn’t make it, she felt embarrassed.
“Now I feel glad to share because I don’t want someone else to go through something similar and not know that there are other people who have survived the same thing,” Clarke said. “I don’t want them to feel like an island.”