Photo courtesy of Tonya MacNicol.
Chelsea residents Tonya and Chris MacNicol at the Walk to End Lupus in April.
Tonya MacNicol was so tired she couldn’t even open her eyes. She sat on the couch listening to her young sons play, hoping they would be safe until her husband Chris came home. If one of them had gotten hurt, she wouldn’t be able to help them.
Diagnosed with lupus in 2006 at the age of 32, MacNicol said that’s one of her clearest memories from the early years of living with a chronic illness hallmarked by pain and extreme fatigue. The Chelsea resident and stay-at-home mother of three is now the leader of a local lupus support group and was the chair of the 2016 Walk to End Lupus, which was held in April.
Lupus is a disorder that causes the immune system to attack parts of the body, commonly including the skin, joints, kidney and heart. Some people with lupus live in a constant state of sickness. Others, like MacNicol, can be very healthy and then experience a flare-up that leaves them bedridden for weeks.
“If you get 10 people lined up with lupus, you’re going to get 10 different people’s different stories because it affects everybody different,” MacNicol said. “The flu times 10 is the best way I can describe it to people that don’t know what it feels like.”
Looking back, MacNicol said she has probably had lupus at least since she was 21, when a flare-up made her unable to leave her bed for two weeks. It took years to finally reach a lupus diagnosis, as the symptoms vary and can be attributed to other causes. MacNicol said different doctors diagnosed her with mononucleosis and diabetes.
After learning she had lupus, MacNicol began a long process of learning how to minimize her symptoms and flare-ups through medication, diet and exercise, as well as preventing herself from overexertion during her healthy days.
“Lupus people tend to overdo just because they feel good for a little while and they want to go, go, go until the next flare hits,” MacNicol said.
She also had to begin relying on her husband and a support network of family and friends to care for her sons — 13-year-old Tate, 11-year-old Tanner and 7-year-old Tucker — during the flare-ups. MacNicol said the importance of that support really hit home in spring 2012, when an especially bad episode struck for about three months and then returned in the fall.
“When I was at my sickest, I could sleep 22 hours a day and still I could barely get to the bathroom and back,” MacNicol said.
At 41 years old, MacNicol hasn’t had a lupus flare-up in about a year and is feeling “the best I’ve felt in a long time.” The MacNicol family spends a lot of their weekends together, as Chris’s medical sales job involves a lot of traveling, and they enjoy camping and being outdoors. However, all three of her sons know how important it is when their mom needs to rest.
“They don’t really know a mom without lupus, which is hard,” MacNicol said.
The experience of being diagnosed with a chronic illness at a young age has strengthened both MacNicol’s marriage and her faith, she said.
“When you’re stripped of everything and there’s nothing left to hold onto, you realize where your faith lies,” MacNicol said. “There were days that’s all I had.”
She also stays involved in Birmingham’s community of people living with lupus. This year’s Walk to End Lupus, held on April 10 at Veterans Park, raised over $57,000 so far, MacNicol said. In addition to being event chair, MacNicol walked with a group of about 100 people called the Miracle Mob.
Her lupus support group meets the first Saturday of each month at St. Vincent’s One Nineteen. MacNicol said the group is focused on positivity and helping to manage symptoms, but it also help people to know others who understand what they’re going through.
“It’s different with a chronic illness, especially one like lupus, because you look normal and you look like you’re not sick, so people don’t really get it. Family members don’t get it,” MacNicol said. “It [the support group] just makes you feel more normal.”
This month’s meeting is May 7 from 10 a.m. to noon and will feature a dietitian sharing information about a healthy diet for lupus. For more information, call 1-877-865-8787.
