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The Beauty of Butterflies
The Stories of Women Living with Lupus
By Rashida A. Marshall
Still considered to be a complex disease, lupus is a condition that many women across the U.S. are learning to cope with. Affecting nearly 1.5 million people in the U.S., lupus is a chronic autoimmune disease where the body begins to attack itself and symptoms vary from person to person. Over 90% of those affected by Lupus are women between the ages of 15 and 45. African-American women are three times more likely to develop the disease and tend to deal with symptoms of a higher severity.
A common side effect seen by those with Lupus is a rash across the cheeks and nose that is shaped like a butterfly, giving those who live with it the nickname ‘butterflies’. AFIYA Magazine had the wonderful opportunity to sit down and speak with Chastity Corbett, Tonya Moore Butler, Jessica Artis, Xena Morgan and Charlene Williams, five women in the Virginia area who are living with Lupus. These brave butterflies, all of whom attend a support group offered by the Lupus Foundation of America, opened up about their lives and experiences with Lupus.
Rashida: What were your immediate reactions once you found out you had lupus?
Jessica: I didn’t know anything about it when I got it and at that time I was 18 and I had the butterfly rash. I didn’t know anything other than that it was an autoimmune disease. Since the disease had progressed so quickly and doctors were only diagnosing the symptoms and not the root cause. By this time I needed chemotherapy, high doses of intravenous steroids and more. I went from being an athlete at hundred and thirty pounds to my hair was falling out, losing weight, etc. Everything hit me at once so it was a lot.
Tanya: When I was first diagnosed I didn’t take it as seriously because it was only affecting my skin. Once I was fully diagnosed with systemic lupus, I started to hear more about it and the other symptoms. I felt fully functional because my symptoms weren’t as bad. But I was in denial. Both my mother and godmother died of lupus and when my godmother passed I began to pay more attention to it. I lost 95% of my hair due to the lesions, so I knew I had to take care of myself.
Charlene: Hair loss was a result of mine as well. My hair started coming out in patches. I would comb it and wash it, and it would just come out in large chunks. So that was a trigger for me, as well. I began to wear a wig and have been doing so ever since. Now 17 years later, I recently started breaking out on my scalp due to the disease so I just cut it all off and I now have a low cut.
Xena: Before being diagnosed at 12 year old, I had pain everywhere, spots of alopecia, white spots on my back. No one believed me till my knees were the size of cantaloupes. People thought I was a hypochondriac. After diagnosis, I was told that I couldn’t do a lot which made me miss out on what the other kids my age were doing. I had to start getting blood transfusions at the age of 12.
Chastity: I didn’t know what lupus was. I heard the word before, but I didn’t know what it meant or what it was. I went to the internet to research it like most people do. The things I read startled me. I remember being on a three way call with my mom and sister talking about it. I told them at least I know what I will die from, and we all just cried on the phone. That was on July 5, 2005, the day I was diagnosed. Today, I am more knowledgeable, and I will win this battle!
Rashida: Some of you mentioned that you kept the diagnosis a secret at first. Why was that, and how did it help once you finally opened up about it?
Xena: No one believed me, and I got tired of no one hearing what I was saying so I thought to myself, why am I wasting my time and my energy? It made me upset, and I just got to a point where I couldn’t hide it anymore. I was 98 pounds and in a wheelchair so it was clear that something was wrong with me.
Chastity: I didn’t want people treating me differently. I didn’t know how to explain to them what it was. When you say that you have an autoimmune disease, some people are quick to associate it with HIV. I know it is because they do not know what lupus is, so I not to be offended. I just didn’t want people to treat me with kiddie gloves. I finally decided that I had to open up because if something happened to me while I was out with someone they needed to know what was wrong. They needed to know what to tell the doctors, so that I could get proper treatment. I was in and out of the hospital so much that I realized that it would be selfish of me and dangerous to not tell those close to me about my medical condition. They were surprisingly supportive, and it gave me the encouragement I needed to speak out and raise awareness about lupus.
Tanya: I was very independent and the one to whom people ran for advice. I had to be strong for everyone, and I didn’t want to burden people with my issues. Now, I have grown spiritually, matured and have met others with lupus. These things have helped for the experience to get easier and it has boosted my confidence. My questions have been answered, and we support each other. I also want to share my story to help others. Sometimes when I would look in the mirror and see my hair loss, I would cry and feel ugly. It took me a long time to look and say, I was beautiful. Recently I had a flare-up and normally I put makeup on due to the lesions, but I wanted my face out so I went to work without makeup, and I felt beautiful.
Charlene: When I decided to cut my hair, I remember I would take my hat off only while I was in class but I would put it on around other teachers, during meetings, etc.. Then one day I just shaved it all off because I couldn’t hide it anymore, and I was tired of it. I can recall one of my students yelling out, “Ms. Charlene, you’re absolutely beautiful, and the tears just rolled from my eyes.
Rashida: Who or what has been your biggest support or something that has helped to keep you going?
Charlene: God. If it wasn’t for him I don’t know how I would have made it. Some days I’m tired as I don’t know what, but I just get up and get out there. There are some times when my supervisor expects me to call out of work, but I don’t. As long as I can move and get out and live, that’s what I’m doing.
Tanya: Same here. I force myself to move. If I have the ability and am physically capable, then I’ll do it. I listen to my body though and rest when I need to, but I know that there are people who are confined to their beds who cannot do what I’m able to do so I make the most of what I have. Our families our motivation as well. They help us to find the strength. For me my kids are so young and I hated that they had to see me go through all of this and that I couldn’t do certain things with them. But they gave me the strength to keep going and to keep pushing.
Chastity: My faith keeps me going. I know it is nothing but Christ who strengthens me. Being there for my family keeps me going. My children may be older now, but they need me. I have a one year old grandson that I absolutely adore. My family is my heart. They are my support system, and they are the ones who are living with lupus with me.
Rashida: What would be your advice to women who may be going through similar struggles due to their Lupus condition?
Tanya: Stop beating yourself up. I had to remind myself that my kids are smarter than what I give them credit for it. When I explain things to them they understand that Mom was not able to do everything. So it was me beating myself up more so than others not understanding. Allow yourself to do what you need to do for you.
Jessica: Learn to accept. I was in denial for a long time and didn’t want to accept the diagnosis and all the things that it would hold me back from, especially at such a young age. I even used ways to self-medicate so I wouldn’t have to deal with it and I had to learn to let those things go. So once I decided to accept the diagnosis and everything that came with it it, coping with it became easier.
Chastity: You are not alone. It is okay to need help from others at times. It doesn’t make you any less of a woman, mother, or wife. We tend to wear the weight of the world on our shoulders. When you are living with lupus or any chronic illness, it is okay to say “no” and take the time that you need for yourself. We have to learn to do this more often. It is not being selfish. If we do not take care of ourselves, then we won’t be able to be there to help take care of our loved ones.
Rashida: What healthy lifestyle changes have you all made, and how have you found this to help with coping with Lupus?
Charlene: I’m a stickler for sweets, but I have made an effort to eat healthier and limit sweets. I’m also looking into water aerobics as another form of physical activity.
Tanya: Cutting back sugar has lowered the amount of flare-ups that I have. I stick to fresh fruits and veggies, and I’m always reading the labels on food. Organic foods help to keep me feeling better as well. If I’m craving sweets I won’t deny myself fully, but I do aim to consume fruits more often than not. Sometimes the medication can give you intense cravings.
Jessica: At one point I was 185 pounds, and now I’m at a steady 152 pounds. A big part of that improvement was me learning to control my self-medicating activities and late-night eating. The medicine would cause me to overeat as well. I really enjoy beer and would drink too much of that. I began to drink more water, and I try to make more home cooked meals. I also aim to stay away from processed foods, and I work out more often. Like Xena, I also use essential and natural oils, and I even pay attention to how healthy living helps me mentally, and that has helped me a lot.
Rashida: How do you hope your story helps others?
Tanya: Joining the committee gave me more confidence to speak out and share my story. I think that we all have a story. We’re not put through things such as this for no reason. We never know if we’re encouraging someone or even saving a life.
Chastity: For me, we just want to keep promoting awareness. There are a lot of people who still don’t know about lupus or what it is. It’s one that just is not as well known and we want others to know that they can live with and that they will make it. The more we discuss it the more we’ll be able to help each other. I want to uplift other butterflies so we can support one another.
Individuals who are interested in offering support to the those living with Lupus can attend the Walk to End Lupus Now, being held on June 10th from 5-8pm at the John B. Todd Stadium in Newport News, VA. It is one of the signature walks held by the DC, Maryland and Virginia chapters of the Lupus Foundation of America. The walk helps to raise funds to assist individuals in area who are living with lupus to receive the assistance they may need. The Grand Marshal for the walk this year will be Ms. Zenay Burton, the founder of We Win Lupus Foundation and the sister of actress, Tichina Arnold.
For more information, visit www.hamptonroadslupuswalk17.kinetra.org or call 202-787-5383.
P.O. Box 5201
Tallahassee, FL 32301