May Is Lupus Awareness Month: A Body at War with Itself
Mary Wells was 38-years-old when she was diagnosed with lupus, a long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue.
By Jonathan Gramling
Back in 1997, Mary Wells was in the prime of her life. But then her body had a different notion and began to develop symptoms that Wells thought were early onstage arthritis.
“I did not know what was wrong with me actually,” Wells said. “I noticed that my joints, knees, hands and body would just lock up. At one point, I couldn’t even walk up the stairs to get into my bedroom to lay down. My joints ached. I could hardly hold a glass or make a fist, those types of things that you associate with arthritis.”
Wells went to the doctor and after extensive testing that included having a sample of her blood being sent to the Mayo Clinic for testing, she learned that she had lupus. According to Medical News Today, “Lupus is a long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue. Symptoms include inflammation, swelling, and damage to the joints, skin, kidneys, blood, heart, and lungs.”
For the past 24 years, Wells has been coping with lupus. And for the first 17 years, she continued to work. But then, it just became too much.
“You can’t tell that people have lupus,” Wells said. “That is the thing that really stands out. People say, ‘You don’t look sick. It doesn’t look like anything is wrong with you.’ But believe me, it’s a whole another thing when you are living with a chronic illness. Lupus is a serious thing. There is no cure for it. You have to manage yourself in a way that if you know you are in the midst of a flare-up, you have to shut everything down. Your body talks to you. You have to listen and pay attention. Some people just don’t. Everyone is in their own place. It was almost seven years ago that my doctor said, ‘Mary, I’m tired of you beating your body up. You need to apply for disability and stop working so that you can actually take care of yourself. I had tried all kinds of modifications at work. I was resting during the day. I had desk adjustments. I had altered schedules, all kinds of things. Thank God, I had an employer who was gracious enough to go through all of that with me and didn’t put up a stink about stuff. It was really helpful and I was very appreciative of that. But at the end of the day, my body was like, ‘No! No! No! This isn’t working.’ You have to obey your body.”
Wells also founded the Lupus Support Group for Women of Color. Why women of color? Well lupus affects women more than men and seven out of 10 women with lupus are women of color.
“The women and I get together once per month,” Wells said. “We talk about diet and exercise. We do walking groups together. We try to do social activities, pre-COVID-19 of course. We have a sisterhood of women who know what it is like to have lupus and also just to have women who know what you are talking about when we talk about issues with our skin, which is a whole another issue dealing with lupus. We have to wear sunscreen and a big hat because the sun and the ultraviolet rays can cause flare-ups very easily. We have to decide what time we go out to handle whatever we need to do. Some people just take going outside for granted.”
One of the effects of lupus can be brain fog.
“You could be going through the course of your day and then you have issues with word recognition,” Wells said. “You can’t find the certain word that you are looking for. It’s just mentally challenging sometimes. And it could be because here in the flare-up with your lupus, it could be that you are just under a lot of stress, which is causing this to happen. Maybe you didn’t get enough sleep, which typically those things could happen to anyone. If you have lupus, it’s more prevalent.”
That world also became uncertain when former President Donald Trump declared that hydroxychloroquine was effective in treating COVID-19, which later medical studies showed that it wasn’t. Nonetheless, it caused a run on hydroxychloroquine.
“The medication for lupus that is most common is hydroxychloroquine,” Wells said. “I and everyone else who lives with lupus all across this country had to deal with not being able to get a 90-day supply like we are used to having. Some pharmacies didn’t have the medication when it was time for you to refill. It was very frustrating. But hydroxychloroquine is the main medication that they go for. It’s a medication that they commonly use for malaria. It’s been effective for years for lupus. There are other types of medications they use as well. But hydroxychloroquine is the medication that I take.”
When it was formed, the Lupus Support Group met at the Urban League of Greater Madison. It was set to start meeting at the Foundation for Black Women’s Wellness beginning in 2020. But the Foundation closed and so the Lupus Support Group had to go virtual. And while there was definitely something lost with not meeting in person, there was also something gained.
“We have women in the group who are newly-diagnosed who are in their late 20s,” Wells observed. “We have women who are in their 60s. It varies in terms of the length of time they have been diagnosed. They might move here from other places. And that leads into now with Zoom, we’re able to reach women in other states. We’ve had women who connect with us every month from Northern California, Texas, Illinois, Pennsylvania and New York. And it is growing all the time. We have roughly 15 women in the group from Madison. I attend a lot of Zoom calls with doctors who had topics on living with lupus during the pandemic, the extra steps you need to take to protect yourself and your loved ones. It was extra hard and it still is. Thank goodness for Zoom. If we didn’t have that tool, I would really hate to think with the effects of depression and things like that, which we automatically have anyway just living with a chronic illness would be worse. Sometimes the women will reach out individually to each other to help get through certain particular things. So we have each other. We’re like a little small family now.”
The month of May is Lupus Awareness Month and Wells is trying to get the word out.
“I would like to let people know that this is the month of May, which is Lupus Awareness Month,” Wells said. “Some people probably never hear about it. I’m just trying to get the awareness out there and let people know we are here, Lupus Support Group for Women of Color. That’s how people from the different states have found us. They search online. They say, ‘We don’t have anything like this here in New York. Do you know of any connections here?’ I tell them I don’t but they are welcome to join us with Zoom.”
In trying times, it is important to get support from those who understand. If you have lupus, the members of the Lupus Support Group for Women of Color will understand what you are going through.
For more information, contact Mary Wells at email@example.com.