Andjenadebie Autar won't let lupus get in the way of chasing her dreams
by Kevin Headley
“It is difficult or impossible to see from my appearance that I have systemic lupus erythematosus, also known as simply lupus,” says the cheerful and radiant Andjenadebie Autar. She seems to have limitless energy. “I don't let my illness define me, but I do have weak moments that I've learned to deal with and understand over the years. I let others know when I can't meet up that day and when I need some space for myself.”
She recently unveiled a large billboard on Wilhelminastraat with a reference to her website www.andjenadebie.com. She hopes to encourage passers-by to visit her site and get more information about lupus. On the site, she also shares personal stories about her fight against the disease and how she copes with it. She wants to be an inspiration to others and increase the awareness of this disease in Suriname, so that others who live with it know that they are not alone. She won't let the debilitating illness get her down and she lives her life the way she wants. Of course, she makes sure to eat well, exercise enough, get plenty of rest and get regular checkups. Through her website, she shares this information and what she experiences with fellow sufferers and interested parties so that they can get an idea of what life with the disease can look like. She has already had a lot of positive reactions. Many people didn't even know they had lupus until after “years of medical issues and tests”.
“You have to know what to pay attention to and if your symptoms return, insist on further investigation. Only a small percentage of people get this disease. Doctors therefore do not test for it right away. As a result, the disease often goes undiagnosed for years. This has adverse consequences when it is only discovered at an advanced stage. However, if one is aware of the symptoms of lupus, they can insist that they be tested for it. Lupus is not a death sentence, and you don't have to suffer long if it is detected early. You can take measures to combat the symptoms as much as possible. I know all about that and share that knowledge and experience on my website. It is not an easy process, in part because it is different for everyone; no two lupus patients are the same.”
Living with lupus
Andjenadebie first began to suffer from lupus during a long holiday in the sun in Suriname, where symptoms such as extreme weight loss and a painful canker sore on the roof of her mouth emerged. Autar could barely eat and went to the doctor in Suriname for the canker sore. She was treated but, unfortunately, without result. Although she had always had very thick hair, she began suffering from hair loss just before her vacation. At first, she assumed that the hair loss and the inexplicable weight loss were signs of a vitamin deficiency. However, after visiting several doctors, she still didn't know what was wrong. In the meantime, she had lost a lot of weight and there was little left of her once-full hair. Then she also began to experience pain in her joints.
“I had to get my blood drawn three times a day because they couldn't explain the increased inflammation in my blood. For a certain period, I couldn't even walk anymore; my body hurt so much that I just lay still. I could no longer move and even my fingers were completely cramped.” Her mother had to help her bathe and her father had to carry her up the stairs. Her brother also helped her whenever necessary. For example, if she could not open a bottle of water due to her cramped fingers.
After undergoing months of medical investigation in the Netherlands, she found out that she has lupus. Her life changed drastically. Living with lupus is not easy. You can suddenly experience the symptoms from one moment to the next. That is why regular checkups are important, but you also need to organize your life a little more carefully, so that your body gets enough exercise and rest. Autar works, among other things, as a supervisor and coach for students training to work in health care, e.g., as doctor's assistants, pharmacy assistants and nurses. She has a strong work ethic. She believes it is important to do a good job and has no problem working until she is done with her work. That had to change after her lupus diagnosis.
“I had to change my work schedule,” says Autar. “I used to work long days. I was physically very active, going from here to there, but now I do it differently. I take breaks and I also go to bed earlier. I make sure I get at least seven hours of sleep. My work-life balance has improved and I also notice that my lupus is doing better. I've actually been trying to improve my work-life balance recently. I tend to go hard especially when it comes to work. I've had lab results recently and they looked really good. I am very pleased with that. My rheumatologist is also very happy, because she also knows that I worked a lot of overtime in the past and that it was hard on my body. She saw that reflected in my emergency appointments and in my lab results. The lupus is now calm.”
Talking about lupus
Autar wants to be an inspiration to others by pointing out that she is determined to get the most out of her life.
“In addition, I also want to contribute to increasing understanding in society for people living with lupus. I want people know what it means and how annoying it can be for us. You have to manage your energy and time very well and you are therefore more selective about your activities. That can sometimes be annoying to others because it can seem as if you don't want to make time for them.” Usually, it is because you have to protect yourself or you may just not feel like you can do any more some days.”
Relationships aren't always easy with someone who suffers from lupus.
“Partners will have to show extra understanding. They must realize that extra consideration must be given to the person with lupus, as the illness can bring some extra discomfort. It will require a lot of extra patience and that is a challenge that must be taken into account. If I tell someone close to me that I am tired or in pain, they will understand.”
If your partner has lupus, you will have to put extra time, effort and energy into the relationship.
“I have found that in the beginning they say they can handle it. However, once they actually experience how hard it can be, then that understanding is hard to find, and I usually end the relationship. I have never had any desire to have children. It is a very personal, conscious choice. Lupus doesn't make having children easy, but I personally have no problem with that. Women with lupus can have children, but there are many things to consider. For example, it requires lots of checkups. Therefore, if the partner has a desire to have children, it can cause issues. In addition, I adore having my own place, my own house. I have never lived with anyone else and I would like to keep it that way, so that I can withdraw when I need to. I think that's so important but not everyone agrees. I like to discuss topics like this that are taboo for many people, and especially for those with lupus. For example, can you get tattoos if you have lupus? What does a relationship look like with someone who has lupus? Can you have children if you have lupus? These are all things that many people want to know but are afraid to ask. I also talk about going out and looking sexy with lupus. You have to be more aware of your limitations than others; accept them and take them into consideration when you make plans.”
Systemic lupus erythematosus (SLE) is an autoimmune disease. In SLE, the immune system turns against its own cells. Cells are the building blocks of our body. The immune system is supposed to protect the body against pathogens, such as bacteria and viruses. This is done with antibodies. Antibodies clear up the pathogens. In SLE, antibodies turn against their own cells. And then someone can get inflammation anywhere in the body. This often affects the skin, joints, kidneys, lungs and brain. The cause of lupus is still unknown. Researchers have evidence that genes, hormones, severe stress, sunlight and infections may play an important role. Lupus is not contagious. Lupus is more common in people of African, Asian, Native, or Hispanic descent than in white people. A rheumatologist is a doctor who, among other things, specializes in the treatment of lupus. However, since Suriname does not have any rheumatologists, lupus patients in our country are treated by internists.