Eight years ago Michelle Thurston's suffering began. The then 27-year-old said she felt like her body was going haywire. She endured joint pains, her blood pressure dropped dangerously low. Her healthcare physician tested her for HIV twice -- because he didn't know what was going on with her. Thurston's body was being besieged by an autoimmune disease, lupus.
In those early days she also had to deal with the whispers about her health as people speculated about what was going on with her.
In lupus something goes wrong with a person's immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders" like the flu). Normally, a person's immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means that a person's immune system can't tell the difference between the foreign invaders and the body's healthy tissues, and creates antibodies that attack and destroy healthy tissue. The autoantibodies cause inflammation, pain and damage in various parts of the body.
"When I first started getting sick, it came on as bad joint pain -- everything was going haywire in my body -- my blood pressure would drop dangerously low, and my healthcare physician tested me for HIV twice; he didn't even know what was going on. It was crazy. He kept saying I'm going to test you for this, even though I know you don't have this."
Thurston's first symptoms materialized in 2009.
"I woke up one morning and it almost felt like I had the flu. My body was just totally stiff. I saw my doctor and he wasn't sure what it was. I came back ANA [antinuculear antibody] positive."
In most cases a positive ANA test indicates that a person's immune system has launched a misdirected attack on their own tissue -- an autoimmune reaction. But some people have positive ANA tests even when they're healthy.
During her 2010 physical they told her she had mixed connective tissue disease, which has signs and symptoms of a combination of disorders -- primarily lupus, scleroderma and polymyositis. For this reason, mixed connective tissue disease is sometimes referred to as an overlap disease. In mixed connective tissue disease, the symptoms of the separate diseases usually don't appear all at once. They tend to occur in sequence over a number of years, which can make diagnosis more complicated.
In 2012, the polymyositis -- an uncommon inflammatory disease that causes muscle weakness affecting both sides of the body which can make it difficult to climb stairs, rise from a seated position, lift objects or reach overhead, affected Thurston. Polymyositis commonly affects adults in their 30s, 40s and 50s, and is more common in blacks than in whites, and women are affected more than men.
"I had bad pains in my hands and legs and couldn't walk up stairs, or get up off the toilet ... I couldn't brush my teeth or comb my hair, that's how bad it was," she recalled.
That was when her sister took her to see a rheumatologist in Florida, and she received a lupus diagnosis.
Her initial reaction was shock.
"I didn't know what it was. Didn't know what it entailed. I was clueless. Within the two to three hour span after I came down from that shock, I started Googling. I was hungry for information. What is this? What do I have? I didn't even know anyone with the disease."
She is the first person in her family to be diagnosed with lupus.
The people she knew who knew someone with the disease she said simply made her nervous when they told her the person had died.
But her rheumatologist's explanations of the disease calmed her.
"The rheumatologist explained to me what the disease could do to me, but said with a good, healthy lifestyle and medication that I would be fine. He told me there's nothing wrong with my womb and that I could have kids. That I wouldn't die, and that made me feel a lot better. With him telling me that, and a lot of the support, I quickly got a jump on it, and I can say because I've changed my lifestyle to a more healthier one, and I visit the doctor regularly, I've been in the best shape of my life," said Thurston, 32, who resides in Marsh Harbour, Abaco.
A few short years ago she couldn't make that claim.
"I began to lose weight drastically when I got so sick, and people told me all kinds of things -- I couldn't have children, they told me I must have sugar ... all kinds of things," she recalled.
Once she was officially diagnosed the doctor explained to her what the disease could do to her, but that with a good, healthy lifestyle and medication she would be fine.
With an official diagnosis, when she did tell people she had lupus, she said from their responses, due to their lack of awareness, they came across as if she had told them that she had been given a death sentence.
"All they knew was if you know someone with lupus they wasn't going to live long."
To others she had to explain what the disease is, and that if she sneezed on them that they would not catch lupus.
"I had to explain to people that when they have a cold their body would fight the cold, whereas my body would fight the cold and me. So with the awareness, people understand now what the disease is, how it is treated, and we're not treated as outsiders anymore."
Lupus Awareness Month is observed during May to increase public understanding of this cruel and mysterious disease that ravages different parts of the body.
Thurston is one of millions of people worldwide struggling with the often debilitating health consequences of lupus, a potentially fatal autoimmune disease capable of damaging virtually any part of the body, including the skin, heart, lungs, kidneys and brain.
In the five years since diagnosis, Thurston says she has been level. By taking her medication on time, and with regular visits to her rheumatologist, she says she has gotten to the point where they are gradually weaning her off her medication.
"That's how good I'm doing," she said.
While she's faring well, Thurston is cognizant of the fact that there are people suffering with lupus who are battling constant flares and who are scared, feel hopeless, and depressed, and she wants them to know that there is hope.
For her, she said awareness means giving people hope that their life doesn't have to be in turmoil, and that the support group Lupus 242 is there to help them get through the tough times. She said the focus on awareness has brought education to supporters and lets them know that they're not alone.
Thurston also says support is crucial to the person diagnosed with lupus -- support that she enjoys in abundance from her family and coworker.
"They really watch over me and always show support. I don't think I would be as healthy as I am today if it weren't for them. They give me that hope and they make me want to get up every day and fight," she said.
For more information on Lupus 242 and its events visit www.facebook.com/lupus242, email lupus242@outlook.com or call 242-525 9967.

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