May Is National Lupus Awareness Month: Minimizing the Impact Together
Mary Wells has been leading the Lupus Support Group for Women of Color since she founded it in 2014.
by Jonathan Gramling
Mary Wells, the founder of Madison’s Lupus Support Group for Women of Color, has known she has had lupus since she was 37-38-years-old.
“I actually experienced the symptoms well before,” Wells said. “It was kind of like a mystery. I didn’t know what was happening. And my doctor didn’t know what was happening. Of course, at that time, I was seeing just a regular primary care physician. And just as time went on, maybe about a year, we realized that everything that his team was trying wasn’t working. And then she thought that maybe she should refer me to a rheumatologist. That’s where the other testing came in. And that eventually led to the diagnosis. At first, I was diagnosed with something called connective tissue disease. And then that turned into a lupus diagnosis and those other auto-immune diseases that came along with my diagnosis.”
Lupus is an all-invasive disease.
“Lupus is an auto-immune disease that basically attacks your system,” Wells said. “Everything that you have that is supposed to help you recover from infection, everything that keeps your body in balance, when you have lupus, your system is fighting against yourself. It attacks yourself. So when you’re trying to feel better and get better and go through the regular course of a cold, lupus rears its head and says, ‘No, we are attacking. We’re not going to let you feel better yet.’ It’s really a strange kind of thing. It attacks your body when it should be helping your body to get better.”
Unfortunately there is no cure.
“They are always coming up with different medications to help people in different stages,” Wells said. “If it is caught soon enough, you have a better chance of leading a fairly normal life. Some people are in the later stages where it affects your kidneys. Some warriors are on dialysis at that end of the spectrum. But there is no cure for it.”
While there is no cure, steps can be taken to minimize lupus’ impact.
“There are things that bring on triggers where your lupus flairs that the average person wouldn’t have,” Wells said. “For example, the sunshine comes into your vehicle going to Costco and it’s a bright, sunny day. You wouldn’t think twice about it. But lupus warriors have to protect skin at all times. The sun is not our friend in that regard. So we have to be mindful of our sun exposure to protect our skin. You will see some lupus warriors with long-sleeved, light jackets on in the summertime. They may have scarves around their necks and may be wearing a hat. We have to get out to go to work or just doing daily tasks and activities out in the community, those are the things that most people don’t have to even consider. Being a lupus warrior, those are things that we would have like sun screen. You have to make sure the protection, at least I recommend, is at least 30 SPF or better. But I’ve heard that 50 SPF is the best recommendation. Your eyes are definitely an issue that you have to be careful about. You have to be careful from head to toe. Lupus affects so many organs in the body. It’s not one over the other.”
Having lupus can be very isolating. Staying at home to minimize the impact is not always the best option. And so Wells sought out support. She joined a lupus support group that was open to all women.
“They didn’t understand what I was talking about if I had challenges at the time, being a single mom raising boys and those types of struggles that come along with that,” Wells said. “The people who were in the support group were like, ‘We don’t know anything about that kind of a skill.’ With stress, there could be flareups and those kinds of things that everyone who has lupus knows that those are common things. But when you go a little bit deeper and you start talking about life’s circumstances, there can be a divide. In my group, we definitely have an understanding of those levels of stresses when we’re at the doctor’s office and we’re not being believed about our medications, not being believed about our symptoms. We’re being accused of drug-seeking, those kinds of things that other people probably don’t have to encounter because of the color of their skin.”
And so Wells decided to found the Lupus Support Group for Women of Color with support from the Foundation for Black Women’s Wellness in 2014.
“Lisa Peyton, the foundation’s CEO, encouraged me to start the group,” Wells said. “This conversation that we had been having about my findings with my experiences with going to the regular support group. Lisa said, ‘Well Mary, you should just start a group of your own.’ I don’t have any formal facilitation training and things that I think someone should have. But here we are 12 years later. It’s been a blessing to be in the incubation of the Foundation for Black Women’s Wellness.”
When COVID hit in 2020, on some levels, it was a blessing because it furthered the reach of the support group.
“I think that every woman who has ever connected with me about joining the lupus support group, from New York to California, the first question is, ‘Do you know of any other groups like that in my area,’ Wells recalled. “And of course, I don’t know their own circumstances in their cities. But I welcome them virtually to our group, which has been going on since 2014. When COVID happened, we went virtual. We ended up with diverse connections going virtual. Other organizations followed the same pattern that created space when COVID happened. I just take that as a high compliment.’
May is Lupus Awareness Month. And so on May 20th, the Lupus Support Group held a special educational and celebratory session.
“We had 85 people register and 71 actually attended,” Wells said. “It was both online and in-person. That was amazing in and of itself. People attended from coast-to-coast. We met people from Dubai, Canada and Nigeria. They were from all over the place. It was amazing. It was more than I anticipated. I was pleased with the outcome.”
One of the areas that the keynote speaker focused on was diet.
“One of the main things that lupus warriors, no matter where we are located, have that struggle with things to eat and what not to eat like everyone else,” Wells observed. “But for lupus warriors, we have to really hone in on that and be intentional about it because it makes a big difference. Our keynote speaker did a great job with honing in on all of the different pieces of that.”
The other main area was exercise.
“Angelique did some movement exercises with us,” Wells said. “I asked her to specifically do exercises with people doing it from a sitting position because I never know where lupus warriors are at. They join us for our monthly meetings from hospital beds, emergency rooms, from their own beds, on vacation. It’s from wherever they are and however they come, it’s okay. So in particular about the chair exercise, we’re encouraging no matter whatever level they are on that day, every day, they can do a little something. Some form of movement is important for our overall health in general, but especially for lupus warriors.”
One of the women who attended the event virtually was Safinat Emengo, founder of Mablevi Lupus Foundation in Nigeria. She was so impressed with the event that she arranged for Wells and Peyton to be invited to a conference in England.
“I received an invitation to speak at a conference called Lupus in Black on the campus of the University of Bolton, Bolton, England,” Wells said. “Just the name itself for me was like, ‘Oh my God.” I know lupus is a worldwide issue with people of color. So for this to be the focus of this kind of conference, I knew I needed to be there. In extending the invitation, Emengo said that she was very impressed with our event. So she told me that she thought we would be a good fit. The event that they are having has dermatologists, doctors, and Lupus UK. To have a U.S. perspective on the committee is truly a blessing. I’m going to be on a panel of speakers allotted a certain amount of time to do a small presentation. Lisa Peyton is coming with me. We’re going to do a joint presentation, which reflects the partnership that Lisa and I have had over the years.”
Wells is a woman of limited means and so she is asking the community for fiscal help to attend the conference.
“Like many conferences, they don’t give you any financial assistance for travel and things like that,” Wells said. “And so I started a Go Fund Me page to help support with travel, lodging, food and all of that. If people want to contribute, they can visit https://gofund.me/026c0c458.”
Mary Wells has been a lupus warrior for many years now and has passed on the support and guidance that she needed at the beginning of her lupus journey. Unfortunately the needs olf lupus warriors continues.
For more information about lupus and lupus resources, contact Mary Wells at mwells@ffbww.org.