When I watched Life of Pi a couple of years ago, I had goose bumps all over. I could truly relate to Pi's struggles of surviving in an ocean on a small boat that he shares with the Bengal tiger, Richard Parker. You see, I have a Richard Parker of my own in life.
Six years ago I was diagnosed with Systemic Lupus Erythematosus (SLE). The diagnosis came as a relief to me after constantly fighting malaise for years. Now that I know my enemy, I can fight it, and finally vanquish it, right?
Wrong.
Until now, they haven't found a cure for lupus yet. So, unless I take proper medications and precautions throughout my life, the disease may not only rob me of my wellbeing, my organs and my mental capabilities, but also my life.
The news shook me to my core. Gone were my dreams, plans and ambitions in life. Among the precautions that people with lupus should take is not to tire themselves and not to stress out. Does it sound possible in this fast-paced modern world?
Many people with lupus, including myself, are very sensitive to sunlight. Exposure to direct sunlight for a prolonged period may send the vital organs in our body to a mutiny. It is, therefore, a challenge to go out and about in the city with a terrible public transportation. The corticosteroids, which I should take daily to control my lupus, also has a side effects of drastic weight gains, infections and weakening of the bones.
I remember going home from the doctor's office that evening, closing all the blinds in my room and turning off the lights, I sat by myself and wept.
It's not fair. I couldn't accept it.
Going out in a taxi a couple of days later, and seeing all the people laughing, walking and running on the streets and under the sun, I felt envious. I felt angry. Life seemed full of possibilities for them. I felt helpless.
Apparently, I'm not the only one who feels this way. When I joined the Facebook fan pages of lupus organizations, I encounter many similar posts from the members. Many of us feel hopeless.
The loss of hope is perhaps the most dangerous thing that could happen to a person with a chronic illness, as it tempts us to give up our treatments and medications, succumb to the disease and die. It's futile, because the disease can actually be managed with proper medications, treatments and a change of lifestyle. Not to mention that doctors around the world are doing their best to find a cure for lupus.
So, if you happen to have lupus, or any other chronic diseases, please don't give up. It's not the end of the world. There is always hope.
After living with lupus over six years, here are some tips that I can share for those who have the same disease.
1. "You have to accept and befriend it."
Tiara Savitri, chairwoman of Yayasan Lupus Indonesia, looked deep into my eyes, when she said those words She continued: "The angrier you are (about having lupus), the more active and damaging it will be.” As strange as it might seem, I've personally proven that the more I give room to my “Richard Parker” and respect its antics, the calmer it becomes.
2. Keep a journal
Lupus is also known as a disease with a thousand faces. So, as a “Lupie” (person with lupus), our days usually vary a lot. One moment we're doing just fine, an hour later we can be down with fevers, stomachache and loose bowels all at once. So, learn what provokes your lupus in addition to the usual triggers (fatigue, stress and sunlight). Also take a note on how each medication affects your body. Keep a journal. A well-kept journal is also going to be a big help for your doctor.
3. Listen to your body
Your body usually sends signals before your lupus flares up and makes you ill for days. Try to listen to these signals. At the first signal, you should stop what you're doing and rest and relax.
4. Enable others to help you
A few days after my lupus diagnosis, I remember going to the office, offering to submit my resignation to my editor. I believed it was no longer possible for me to keep working as a journalist for a daily newspaper in my health condition. Instead, my editor hugged me and said that she would support me and adjust my workload accordingly. She is not the only one. I find that most people would want to help if they understand your situation. So, speak up and be your own advocate. Love and support from immediate social circles is very important to the continuous wellbeing of people with lupus.
5. Join support groups
You may find many useful tips on Facebook fan pages of Syamsi Dhuha Foundation and Yayasan Lupus Indonesia. The Lupus and Autoimmune Disorder Awareness & Support fan page usually shares the latest developments of medical researches on lupus.
6. Be patient
Just when you think you have it figured out, lupus may strike and keep you down for days. Be patient. Don't blame yourself. Don't feel guilty. That's just the way it is. Just take a rest and go see the doctor, if your condition worsens.
7. Light a candle of hope for others
Many people with lupus are very young. They often feel afraid and lonely, and they don't know how to continue living with the debilitating disease. While we don't know all the answers ourselves, we can still befriend and support them. We may not be physically there for each one of them, but we can still chat on Facebook or BBM. The chat would only take a few minutes of your time, but it may mean the whole world for someone in pain and despair.
Sylviana Hamdani works as a journalist for an English news website.
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