Profile: A mother’s struggle: Tonya Macnicol doesn’t let her chronic illness define her, she lets it drive her
Published 9:28 am Thursday, March 16, 2023
Written by Noah Wortham
It was June of 2020 and the doorbell rang when Tonya MacNicol was greeted by her husband, a box of cakes and a lawn full of friends and family there to pray for her.
“It was a really powerful thing for people to show up when they don’t have to,” a teary-eyed Tonya said.
Tonya is a wife and loving mother of three who loves to spend time outdoors, and for the last 16 years she has been dealing with a chronic illness.
“Right now, if you look at me, I look normal,” Tonya said. “I don’t look like I have a chronic illness, but if you had seen me about four weeks ago, I was in an asthma flare. Particularly, I couldn’t Breathe, I couldn’t talk, I didn’t have a voice—All those things.”
A surprising diagnosis
Tonya was the mother of a 3-year-old and a 1-year old when she was diagnosed with Lupus at age 32.
“I had struggled for about 11 years before finding out what it is, and learning about it,” she said. “I realized that I had my first flare when I was in college at the age of 21. There was about a two-to three-week period of time (where) I couldn’t get out of bed and I couldn’t figure out why.”
Her best friend Kelly Knudsen recalls Tonya’s symptoms before the diagnosis.
“At the time of her diagnosis there we things about her that she did that we just kind of played off,” Kelly said. “When she would work and travel, she would pull over on the side of the road and take an hour-long nap in a parking lot. She’s like, “’I’m just so tired’ and I’m like, ‘Okay, maybe you should get more sleep?’ But things like that just kind of started happening more and more regularly.”
The situation got to a debilitating level.
“It really did get to a point where she was pretty much bedridden for weeks at a time where she just would have no energy,” Kelly said. “She would sleep for hours upon hours and if she could get up and go to the kitchen she would be winded, and it would just physically drain her.”
It was disheartening for Kelly to see such a horrible situation happen to her close friend.
“It was extremely debilitating to see your best friend that has always been—I mean we were cheerleaders together all through high school—she cheered in college,” Kelly said. “She’s always been very active and healthy and athletic. To see your friend, go from this really healthy, vibrant, active personality to somebody that literally can’t even go to the kitchen and get water without being winded and in pain was really hard to watch.”
Finally, after a visit to the emergency room, Tonya was told to see a rheumatologist. The first thing the rheumatologist told her was, “You have Lupus.”
“I remember going home that day and just crying,” Tonya said. “I got in the bed with my boys and just sobbed thinking, ‘I don’t know if I’m going to see them grow up.’ There is a grief cycle you go through when you get a diagnosis like that.”
She shared that even when she gets a flare now, she almost goes through that same grief cycle again.
“Like I get mad about it, I’m frustrated again, I get in denial, and then I’m like, ‘Okay, well what can I do to fix it?’ Kind of take control back,” Tonya said. “That journey has been an up and down roller coaster ride. Gosh. I’m usually either really, really sick or pretty healthy.”
Lupus is an autoimmune disease that Tanya describes as the body attacking itself.
“When you have Lupus your autoimmune is all over the place,” Tonya said with a chuckle. “The best way I can describe it to a layperson is the flu times 10.”
A supporting role
As she learned of her diagnosis and how to rationalize her situation, her husband Chris was with her every step of the way.
“We were young, we were married, (its) supposed to be the fun time of your years (together),” Chris said. “The first couple of months were very, very difficult. We still had questions and we were still in the shock of ‘What’s our life going to be like in the future?’”
He explained the first approach he took toward the disease.
“For me personally, as a guy, we want to fix things,” Chris said. “Initially, I was like ‘How can I fix this?’ (and) ‘What can I do to make you better?’”
He eventually learned that this was the wrong approach to take.
“As time went on, we learned more about diagnosis, we learned more about the flares and more about the triggers and just what she needs to come out of a flare,” Chris said. “I learned that it’s not so much of me trying to fix things as it is for me to just be there for her and help her. I needed to make sure that I took care of everything that was on her to-do list. Make sure the kids are fed and bathed, make sure that the kids get to school, make sure that the laundry is timed.”
He recognized that he needed to support her emotionally.
“When she’s in bed or sitting on a couch, make sure that I spend time next to her, not just around,” Chris said. “I know that there were times where she felt so alone when she couldn’t get up off the couch or she couldn’t get out of bed. And so, it was definitely a transition that I had to make from being a fixer to a support person.”
The disease affects people in different ways, which makes it hard to find a cure. Fortunately for Tonya, she was eventually able to go to the number one Lupus doctor in America at Johns Hopkins to try and get some help.
“I had gone through every single thing, (they) asked me every single thing and ended up taking me off a lot of the meds that I was on,” Tonya said. “I just learned a lot.”
Tonya has had 13 surgeries in the past 20 years. She has a puffer that she takes twice a day and a shot that she takes every two weeks, while she does nebulizer treatments four times a day.
“The Lord has carried me through more dark days than I’ve cared to count, but I’m so thankful for it,” she said. “I would say for someone newly diagnosed to find your faith and have hope and know that it’s not a death sentence and know that it doesn’t mean that your life has to end, it means you mind has to change.”
A village of people
Fortunately, during her darkest hours, her family and friends were there to support her.
“I have had to rely on a village of people,” Tonya said. “My parents have been (a) huge support system, my sister has been a huge support system, and I have a number of friends through the years that have really gone above and beyond friendship roles.”
People were there for her and her family. They brought meals and picked up the kids and brought them places so that she did not have to worry about them.
“There were times, I have laid on the couch when they were little playing, and I remember I would lay on the couch and I physically could not just even open my eyes thinking, ‘Lord please just let them be safe until somebody can get here to help me take care of them,’ and as a mom that’s like the most devastating thing in the world,” Tonya said.
Kelly recalls the experience of having to help Tonya.
“The height of it was really right around her diagnosis, and I lived across the street from her and there would be days that she would call me and need me to come over and help take care of her kids because she couldn’t even get up the stairs,” Kelly said.
She shared that she agreed with the sentiment that people were there for Tonya during her struggles.
“She has a very large support system,” Kelly said. “Her family’s really great. Her mom and dad are wonderful. So, they definitely help a lot. There’ll be times that, if she’s really not feeling well, we’ll put together meal chains and things like that where people bring them meals or offer to go to the grocery store or things like that.”
Tonya believes the tough situation has made her sons better people.
“They’re the first ones to clean up after dinner,” Tonya said. “They’re the first ones that will do the dishes and vacuum the floors, and most teenage boys aren’t just going to do that.
Despite the dark days, Tonya has not let her chronic illness deter her from doing good for others.
Tonya started up a network market company selling Plexus products with her husband Chris.
“Plexus has allowed me to have that purpose again,” Tonya said. “To be able to work and help other people.”
They have their own website, and everything ordered from the website can be shipped right to the customer’s house.
She started attending a support group for Lupus but eventually found herself getting involved further with the organization.
“Once I got involved with Lupus Foundation and was able to actually be part of the support group, we made it more of like an educational thing,” Tonya said. “It was cool because people would show up to learn more and to learn how they could take care of themselves better and do that and we built a great little community. We have a great little Facebook group.”
Chris recalls Tonya joining first joining the lupus support group.
“We were searching for other people who had lupus,” Chris said. “Our rheumatologist directed us to a support group that we could go and learn from other people and also share our experiences, and we started out as members and then quickly Tonya became a leader in the support group. And as that relationship built, with that support group, then it started taking on other roles of ‘How do we get the community to know more about Lupus?’”
Tonya also helps with organizing the Lupus Walk, which helps fund lupus research, support and education services.
“We have T-shirts made up and we fundraise for it,” Tonya said. “I think there was one year I raised like $13,000.”
Chris explained more of Tonya’s role in the Lupus Walk.
“She ended up becoming the chairperson that pretty much put the entire thing together,” Chris said. “There was a group of people that also assisted in that but it was just something to gain awareness, and it was important to be able to get the word out and not only get the word out about lupus but also bring people together.”
Tonya recently became a Lupus Foundation of America Ambassador.
“I feel like I have a purpose to help people,” Tonya said. “I have a purpose to share with my people my experiences, so that maybe they can have hope and have a purpose to kind of teach them a little bit of what I’ve learned.”
Despite her continued struggles with a chronic illness, Tonya continues to be active and to be a light to her family and community.