When aches start to creep in and certain changes take place in your body, many possibilities flash through your mind, lupus is hardly ever one of them. As many people living with chronic illness can attest, the road is nothing easy, and I cannot begin to imagine what life is like fighting lupus every day, without a break.
From the outside looking in, the lupus patients (lupies) I’ve met seem strong, unafraid and move about as though they’ve already conquered the battle with the disease.
Recently, I started wondering about how they manage living with lupus and what other challenges they face besides the obvious.
I spoke with Roanna ‘Satra’ McPherson, Raymer Francis- Lynch and Shoyéa-Gaye Grant Massicotte, three lupies living in Dominica, about the struggles they face, coping mechanisms and the importance of a support system.
It has been one rollercoaster of a ride filled with countless hospital admissions, bizarre symptoms like extreme hair loss, rash and weight gain; major operations and emotional turmoil. Though the stories are similar because the diagnosis of systemic lupus erythematosus (SLE) is the same, the battles are different.
What Are Some of the Difficulties Faced?
For Satra, one of the biggest challenges is keeping a stable job. Just recently, she was laid off from the company she spent the last four years with because of her vulnerabilities. “My boss literally told me that he’s not renewing my contract because I have lupus and I’m putting a strain on the company.” Her doctors are now toying with the idea of declaring her unfit to work because of the condition. That she said, is frustrating because she enjoys being a busy body and “just sitting down home doing nothing is not me.”
Shoyéa on the other hand, is Jamaican and has been living with the disease for the past 10 years. She first came to Dominica in 2015 for an internship. As the story goes, she found the love of her life and in 2016 got hitched and moved back to Dominica to start a new life. Though she is now gainfully employed as the clinical psychologist of the acute psychiatric unit, it took nearly a year to get there.
“Lupus might have impacted that,” she affirmed. “I didn’t hide that I had lupus. I was the lupus voice of Jamaica and I spoke about lupus all the time. I was on the tv, I was in the newspapers [and] I was on the radio. On one side – we got it out but on the other side – I was the sick girl with lupus.”
There is no resident lupus specialist or rheumatologist in Dominica, so patients must travel for most of their medical treatment and evaluations. The bills often pile up faster than the symptoms alleviate, and costs are sometimes so exorbitant that lupies remain sick for long periods simply because they cannot afford the treatment.
Satra has flared every month for the past year and believes her condition is spiralling out of control.
“I have two loans I have to pay off and I have no idea how I’m going to do that. I’m due to be back in Antigua to do medicals and to get my prescription and so on and I can’t even afford to do that,” Satra revealed. Her husband is now the sole breadwinner and she admits the family is barely getting by.
“I would like to be able to actually take care of myself when I need to be taken care of. Like, when I need to get my meds, I can just go buy my meds; if I need to see the doctor just go see the doctor. But I can’t – I don’t have the money.”
At times, medications stop working suddenly or come with conflicting side effects that lead to a host of other complications. “One morphine cocktail does nothing anymore,” Raymer stated.
“I’m in constant pain and no matter what I try it doesn’t work. I’m on the strongest pain medication and you take it and you’re high for no reason,” Satra chimed in. “When my meds are working I’m fine – I’m like super woman, I can do anything,” she continued. “But now they’re not working. I can feel my body fighting back.”
It’s been three years since her diagnois and Raymer is now starting to feel changes in her body and she said, it’s not for the better. “Despite being on meds and vitamins, I am not as strong as before – always tired. The feeling of giving up overwhelms [me sometimes].”
The impact lupus can have on their emotional wellbeing is vast and most times seems to be ignored. It’s easier to mask the pain they say, because they don’t want to sound like they’re complaining, or they don’t want to have to explain everything that’s going wrong. Tear streaked faces are commonplace and sometimes emotional outbursts erupt out of nowhere.
The trio has come up with several ways to cope and has devised mechanisms to avoid and manage their symptoms. One of Raymer’s major outlets is basketball. She’s currently the assistant secretary/treasurer of the Dominica Amateur Basketball Association. Though her term is coming to an end, basketball has been her saving grace.
“Another way I cope with pain etcetera, is just plain old laughter and I surround myself with people who love me and care about me,” she added.
Moving to Dominica, along with writing and art has made the biggest difference for Shoyéa.
“Dominica has been good to me in many ways and something happened when I came to Dominica – I started feeling better. It was the first time I wasn’t going in and out of the hospital. I still had flares but even the bad ones weren’t as bad as they were in Jamaica.”
For Satra beach limes, quality time with her children and manicures do the trick.
Still, the support of family and friends but especially that provided by the lupus foundation, has been exceptional to them all.
“It’s one thing to get people who are supporting you – it’s another thing to get people who are living the experience with you and it helps, it really helps. They can relate in a lot of ways – you don’t have to spell everything out. And they’ve come up with a lot of ways to cope, tips. Once I start feeling something I message the group right away and everybody has their own remedy. It’s fabulous and you get to meet a lot of bad ass people,” Shoyea stated.
“They are like my family,” Satra said. “They help me to cope. Especially Raymer, sometimes she helps me out whenever she can financially. I remember this one time I was broke as hell, we had no food in the house and she actually helped me. You wouldn’t believe it, I cried like a baby.”
There’s very fine line between living with chronic illness and being alive with chronic illness and these women know it all too well. So, they make a conscious effort to live life to the fullest, take calculated risks, love unconditionally and never wait for later.
“A lot of people get that close to death experience at the end of life, but I get it so many times in between so I’m like ‘I know what life is about’. I learnt that life is short, and I just want to do what I want to do. I have very little control over so many things that happen with my body [so] what I can do, I want to do,” Shoyéa declared.
Any Advice to other Lupies?
Don’t give up. Don’t get swallowed into depression. Keep fighting and keep trying. When you fall pick yourself up and do whatever it is that makes you happy.
Understand how lupus affect you because it affects everybody differently. Learn what your triggers are, learn how you can cope. Understand the medications you’re taking, the procedures you need to do– the information is out there, and knowledge is power. When you understand lupus that’s the only way you can fight it.
At times the line between being strong and pretending is very thin, and we cross that. But it’s very important to have people in our lives that we can be vulnerable with – that you can cry and say how you feel. Allow people the chance to love you and support you because when you don’t tell people your struggles they don’t get to love you in your entirety.
The lupus association helps – join the foundation.
Any words to family and friends?
Thank you for tolerating us and for listening and comforting us. Thank you for understanding our mood swings and to know that we are not complaining. Never give up on us because we won’t give up on ourselves.
To the people who really stick by and support us and research and everything – you guys are awesome, and you guys are heroes, and just as bad ass as we are. We couldn’t fight lupus without you.