Winston-Salem State coach Tierra Terry persists despite daily struggles with disease

It took six years for doctors to discover what was wrong with Winston-Salem State women’s basketball coach Tierra Terry.

Terry, who played basketball at Winston-Salem State and returned to her alma mater in April after spending five seasons coaching at Virginia Union University, knew that her schedule as a collegiate athlete would be demanding.

Still, she also knew that extreme fatigue and chronic aching joints weren’t normal. Terry’s initial rheumatology testing was negative in 2003, so she pushed through while her symptoms went untreated.

After graduating with her bachelor’s degree in 2008, Terry pursued a master’s degree at the University of West Florida. However, she then developed a butterfly rash that enveloped her face and extended under both of her eyes. In 2009, after years of experiencing symptoms, doctors finally had an answer for why simple tasks like lifting weights and playing basketball had become painful. She was diagnosed with rheumatoid arthritis and lupus, an autoimmune disease where the body’s immune system attacks healthy tissue.

“Sometimes when people see you, they don’t think anything’s wrong with you. They’re like you’re too young or whatever and the whole time you’re like screaming on the inside,” Terry told Andscape. “My test numbers were insane. I think the normal number was 60, and I was at 200. I was like, ‘Yeah, I told you guys something was wrong with me.’ Sometimes they think you’re crazy.”

Since her diagnosis, Terry has familiarized herself with statistics regarding lupus. She knows 90 percent of adults living with lupus are women, and the disease is two to three times more prevalent in Black and Hispanic women, per the Lupus Foundation of America.

As head coach at Virginia Union University from 2020 to 2025, Terry advocated for other women and minorities in the fight against lupus. To this end, her team has hosted an annual Lupus Awareness game and distributed educational materials to fans in attendance.

Coaching with the disease has presented some challenges for Terry. She does a monthly infusion therapy to help with her symptoms, and after the infusions, there are days when her leading practices are physically difficult for her. Terry has been forthcoming with her players about her diagnosis, and they have offered her support, often checking in on her and using her struggles as motivation.

“We knew what she had to deal with on an everyday basis and just knowing how much she pours into us, even on the days she would not be feeling well really just made us want to win games for her,” said senior Taniyah Greene, who played for Terry at Virginia Union last season.

“It was very inspiring to see someone facing such a significant health challenge still dedicate herself to us, whether it was showing up, making sure we’re good, and most importantly, just treating us like her own children.”

Andscape spoke with Terry last week about Lupus Awareness Month and how she uses her platform as a head coach to educate people about the signs and symptoms of the disease, while offering advice on what she has learned through her daily battles with the disease.

This interview has been edited for length and clarity.

Since your diagnosis, how has the disease affected your daily life?

I have learned some different things, like stress is the number one trigger. I can’t stay out in the sun for too long, or I start getting really drained. Everyone’s affected differently, and there are different types of lupus, so I have the systemic one, which affects all my organs and all that good stuff inside my system. I had someone ask me, ‘Is it contagious?’ ‘I’m like OK, you need to go do some research.’

Lupus can bother you physically. So it can be hard to jump in practice like you want to. Before I was taking these infusions, I couldn’t even pass a ball and practice without pain. It’s physically demanding sometimes. Then, when your physical condition gets bad, your mind goes like, ‘I’m not even strong enough to do this.’ Your mind goes all over the place, so you have to win that mental battle every day.

It’s different for everyone, but for me, fatigue becomes a factor. I’m trying to make sure I do what these doctors suggest, but also try to get in holistic stuff, like multivitamins, B vitamins and D vitamins. You have to try to do things to pick yourself up, because you know you’re going to get run down. I’m glad I’m still able to do what I want. You gotta learn how to take care of it and how to balance it. I’ve always had to fight, so I’m not someone who quits.

How do you manage your stress?

My husband is good about telling me not to be fussing too much. As a coach, we’re naturally nurturing. I have had to learn when to tell people ‘Hey, not today’ or ‘Hey, I need some time alone.’ I’ve gotten much better at saying I can’t respond anymore today. I need a break, and I try to stay as active as possible, keeping my body moving. The hardest part for me is probably sleep. I’m just not a good sleeper.

I’ve also learned that having a great support system of people who genuinely understand that you’re struggling and do not judge you. It’s hard for me to ask for help, but I’ve gotten better about it, because I do have friends who want to help me in different ways. It’s about the people around you. I’m a very big believer, so I pray to God. I can’t do anything without God. And I’m like, ‘Hey, God, I need your help today. I’m struggling a little bit.’ So that’s my foundation.

How have your players been helpful and supportive throughout the season?

If I come in practice and sit on my stool, then [the players] know that I had my infusion because normally I’m trying to stay up and walk around and whatever. But, if I come in practice and sit on the stool, my players would be like, ‘Infusion today, coach?’ I have a couple of players who were really good about it, and they would just come check on me. I didn’t have to ask or tell them what was going on. They would check on me naturally, because they just picked up that I didn’t have the infusion, but I’m still kind of out of it and still trying to recover. [They know] I’m doing what I can for them.

Sometimes, as coaches, we don’t like to be vulnerable to our players. I completely get it. But, there are times when your players want to care about you, and they also show their human side. I would tell them that they’ve made me cry every year because they do a lupus game. No matter how many times we do it, it is still touching.

How did the idea of an annual Lupus Awareness game originate?

The first one actually came together with James DuBose while we were assistant coaches at Winston-Salem State in 2015. He put it together, and they did a great job of surprising me. And we had several practice players who were Omegas or Que Dawgs. To look out into the crowd and see that people actually wore purple was like, ‘Oh, my God, this is so touching.’ I’m sure there are a lot of people who either are not diagnosed yet or are too ashamed to talk about it or embrace it, because they probably got told nothing’s wrong with them. So seeing all those people wearing purple meant they recognized it as a cause we needed to acknowledge.

Ever since that first year, Winston kept doing it, and I heard they still do it to this day. It’s nice to see that even after leaving and coming back, I’ve heard about the lupus game. At Virginia Union, my assistant coach ended up being the one who put it together. It’s great to have people who genuinely love you, support you, and see that you’re trying your best every day. To me, it’s not just coach Terry who has lupus; it’s about educating people about the condition. There are people out here who have it and don’t know, or have it and are ashamed, or how many people have no clue what it is, and by the end of it, they’re on their phone googling what lupus is.

Why do you believe it is so important for you to educate the HBCU and coaching communities about this disease?

Sometimes the information doesn’t get transmitted to enough people. When you’re given positions like we are as coaches, we’re able to reach people at all levels and through athletics. We have followings and we can touch so many different categories of people. It’s important that people know coaches are human too, and we go through things. This disease largely affects women of color. But I look at it like you might be inspiring someone who’s conflicted about going forward because they have a chronic illness, and they might look at me and say, ‘OK, she’s always talking about lupus, and she’s coaching, and she’s still doing it, so maybe I can try.’

What would you like minority communities to know about lupus from your advocacy efforts?

If you feel something early, go early, especially if you have a physical marker. If you do have that butterfly rash showing, it is better to get into the doctor’s office ASAP so they can see the rash is on your face, because that will show active disease. [Lupus] is a flare-remission type of disease, so it can go dormant and fool people. That’s why some people take so long to get diagnosed, because you have to catch it in an active phase.

They look for so many positive test results before [doctors] will say, ‘I think this is lupus,’ and it’s further tested. As soon as you see any physical marker, go to the doctor. I just happened to have a butterfly rash, which meant I had active disease. So they were able to catch it that time, but the times before, they couldn’t catch it because it would go active and then inactive. If you notice anything unusual, like a rash, feeling fatigued more than normal, experiencing joint pain, or hair loss, these may be signs of lupus.

I think minorities in general have been taught to be so strong, and we don’t complain as much. We just go, ‘Oh, well, I just gotta get through it.’ Or your family’s like, ‘We don’t go to the doctor.’ Sometimes you have to tell yourself, ‘I need to go to the doctor. It’s not getting better. I’m not crazy.’ You have to suck it up. If you have to go, you have to go. We gotta get over that ‘we’re not going to the doctor’ mentality.

What lessons has your journey with your lupus taught you?

Sometimes you have to let people think you’re crazy. Like, I’m not giving up. You’re just gonna think I’m crazy. I’m just gonna keep coming back. I know something’s wrong with my body, especially when you go from being a Division I athlete to barely lifting my arms, and I’m like, ‘This is not normal.’ I lifted weights every day of my life as a college athlete and even beyond college athletics. So sometimes you have to let them think you’re crazy.

However, one thing that I was particularly thankful for in Richmond was the fact that the rheumatologist I saw was a Black doctor. His son, as well as everyone in that practice, were mostly minority doctors. No one had ever suggested what they suggested, but they specialize in minority care. So, if you can find someone who is a minority, preferably one who understands, even if they are not a minority themselves, but they specialize in minority care. Minority bodies are different than white bodies. I’ve learned that the best doctors I’ve had as far as lupus management have been minorities. It’s just that we [minorities] have different markers. So you can’t necessarily generalize the same type of treatment with brown and Black people, so it’s better if you can find someone who specializes in our markers.