On vacation from yourself: Living with an autoimmune disease
By Kevin Headley
She enjoys her cup of coffee in peace, along with the wind and the atmosphere on the terrace of Hotel Torarica. She deserves it. Just being in a different environment allows her to reset her mind and take a holiday from herself. Not all days can look like this and that's why Andjenadebie Autar, 35, enjoys it so much. She has been living with lupus for twelve years. After many months of research, she was diagnosed with systemic lupus or systemic lupus erythematosus, the SLE variant of the disease. SLE is a generalized autoimmune disease. This means that the person’s immunity or defense system is directed against them in an exaggerated way, such as by forming antibodies that cause inflammatory diseases. It is not yet clear how autoimmune diseases develop. However, it has been found that women are much more susceptible to these diseases than men. Little is known about the disease in Suriname. Autar first showed symptoms of the disease after her vacation in Suriname. After much research it was found that the sun was the catalyst.
“At the beginning of 2005, I started experiencing hair loss,” Autar says. “My hair kept getting thinner even though I had always had thick hair. I also had unexplained weight loss. At first, I thought I had a vitamin deficiency. They say that the disease often manifests itself after a long holiday in the sun. I was in Suriname for six weeks and during that period I suffered from a sore throat. I went to several doctors while I was here, but they didn't know what was going on. In the meantime, I weighed 43 kilos. I had lost a lot of weight and my hair had fallen out considerably. I also started to suffer from pain in my joints, so I got more and more ailments. After months of research in the Netherlands, they found out that I suffered from an inflammatory disease. 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 couldn't move anymore. My fingers were all cramped."
It was a very intense period for the then 23-year-old Autar. Now she must avoid direct contact with the sun as much as possible. “It can't be called a sun allergy because in that case you get a rash, but the sun does activate the disease. The disease causes fever, organ failure and 10 to 15% of lupus patients die prematurely.”
Adapting Life to Lupus
Autar belongs to a lupus support group where, among other things, members share their experiences living with lupus. When a member dies, she is confronted again and again with the harsh reality that people with lupus do not always have a long life. Her periods of illness always cause great anxiety.
"At the end of last year, I got severe pneumonia due to lupus. That was just as intense. Fortunately, my other organs such as my heart, kidneys and liver are still in order. The number of medications I have to take has decreased somewhat, but I have to take everything into account such as the sun, how much energy I use, not exercising too much, and avoiding stress because my body can't handle too much. If I know I want to go to a party on Saturday, I have to organize my whole week in such a way that I can go to bed early, so I have enough energy for that party."
In the early years after being diagnosed with the disease, Autar’s life was on automatic pilot.
"I didn't really think about how much the disease would affect my life. I went to school and I did my best in everything I undertook. After my diagnosis, I was at home a lot. I was on prednisone, an adrenal cortex hormone that is used for severe inflammation, and had therefore gained a lot of weight.
After a while I felt a bit better and threw myself into full-time work again, but I found that I quickly became exhausted. I tried to pick up my studies again, but I kept getting another setback that made that impossible."
She has her organs checked every six months. It is always a nerve-wracking affair. They see if everything is still good and then hope it stays that way.
"My ability to concentrate is also affected. Now if you ask me to read a book and remember everything, I have to do it ten times to remember it all because I am distracted all the time. My head is very busy.”
After twelve years of physically struggling with the disease, Autar recently had to deal with the mental blow of realizing that unfortunately she has not gotten better and has to organize her life around the disease. Previously she had hidden everything, but in the end that was no longer possible. She is learning to deal with all the disappointments and sacrifices she has had to make because of the disease and with all the goals she has not been able to achieve.
Having a social life is not easy
"I have to plan my life in such a way that I have enough energy to get through the week," Autar says. An advantage is that she works for herself, which means she can organize her work schedule as she sees fit.
"If I go too fast, I'll just be sick afterwards. If I want to go out on Saturday night, I have to conserve my energy during the day as much as possible and also take a nap to get through the evening. And I can't stay out too late."
She actually goes out a maximum of four times a year, as that's all she can do. She almost always feels tired, which is also a symptom of the disease. She tries to maintain her stamina by means of an adapted sports schedule, so that she can handle a little more.
"A tough part is that I can't plan my life how I want. I can't make appointments for Saturday because I don't know if I will be feeling well on Saturday. If someone asked me 'where do you see yourself in five years?', I wouldn’t know how to answer. I should be happy if I'm still here in five weeks because the disease can suddenly cause serious complaints."
Autar is also single, and at this point she also doesn't want to commit to anyone.
"The fact is that I have to take the disease into account so much that I don't want to think about taking someone else into account as well. I'm already too busy with myself. In addition, I don't want to burden others with my 'problem'. The first seven years of the illness I had boyfriends but I never told them I had lupus. I pretended I was a healthy person when I wasn't. But now I am open about it as soon as I get to know someone. It doesn't matter if it is a friendship or something more; I immediately indicate that I have an autoimmune disease, so they know if I leave early one evening or can't go out at all."
She also has no desire to have children, but admits that could change. Lupus is not thought to be hereditary, so at least that's something Autar doesn't have to worry about.
Holidays in Suriname therefore give her not only a vacation from work and study, but also a vacation from herself. Now she can just relax with family and enjoy the little things. She therefore tries to visit Suriname at least once a year. That does her good and also gives her 'energy' to continue fighting.
Future with Lupus
Despite everything, Autar has a positive attitude. She likes to travel, she blogs and she has also started studying part-time again. She hopes to finish her studies. Even if it takes ten years, she is determined to achieve that goal. Her work is also important and she is slowly coming to terms with the disease.
"I'm not there yet. I had never really accepted it before. I was like: I don't want to be sick. But now I'm starting to realize that I can't do everything anymore and I have to take my body into account."
Many people are walking around with lupus and don't know they have it. They blame their ailments on other diseases and struggle for years without knowing what exactly is going on. Therefore, they do not get the right medication to deal with the symptoms properly. She also wants to share information with people who have the disease about what they need to take into account in terms of diet and exercise.
"Talking about the disease also helps people who are suffering from the disease."
She is sharing her experiences and knowledge about the disease in Suriname and hopes to make society more alert here. Although there is currently no cure for lupus, medication can significantly improve the quality of life.
There are different types of lupus, which differ from each other by the symptoms that manifest themselves. In lupus erythematosus (LE), the symptoms are limited to the skin surface. When you have this form of lupus, a skin defect generally develops that is manifested by a red color of the cheeks and nose.
Its shape resembles that of a butterfly and this type of rash is therefore also called butterfly exanthema. Within lupus erythematosus, various diseases are recognized, namely subacute cutaneous PE and chronic discoid PE. In the first variant of lupus erythematosus, only the sun-exposed areas of the skin are affected. The red spots will heal after treatment without leaving any scars. The second form of lupus erythematosus does leave scars, while damage to the hair follicles can also cause baldness. When, in addition to parts of the skin, certain internal organs are also affected, it is called systemic lupus erythematosus (SLE). The most common symptoms of this variant of lupus include joint complaints, kidney problems, heart and lung abnormalities, and blockages of blood vessels. This can lead to thrombosis, arthritis and anemia, and inflammation of the pericardium, joints, kidneys and lungs.