By Dr Anupa, Dermatologist
A year ago Shikha walked into my OPD, to consult for a rash on her trunk. She was a bubbly Rajasthani girl and a final year medical student. She was also a constant face in theater events in our medical college. Everybody knew Shikha.
“I have SLE and I am on so and so medications”. She spoke in an unassuming, ‘as a matter of fact’ manner , leaving me perplexed as to if she even knew what a big deal SLE was (or so I thought). I wrote a prescription for her drug induced acne . She profusely thanked me and walked away, fluttering her labcoat and stethoscope, balancing the heavy backpack. Few months later,she came back to us, this time as an intern, and we happened to go for a coffee together. After some pleasant talks, I started asking her about her condition of SLE. Let me summarize our conversation over the following Q & A paragraphs.
So when did you know you have SLE? What happened?
While in high school, my ankles used to swell up and I used to get rashes when I went out to play. I was told by a doctor at my village that it was a sunburn. He prescribed come creams and the rash became a little better with that. The ankle swelling just didn’t go away, it ‘spread’ to my hands also. Papa took me to medical college and that’s when the doctors confirmed that I have SLE. They gave medicines and I got better gradually. However, when I stopped the medicines, the pain came back and rash too. I was feeling unwell. My parents wondered why I got sick again despite taking ‘the full course of medicines’. We met a Unani physician and she gave a couple of ointments and concoctions. Later I developed breathlessness, was admitted in ICU and this time, the doctors told us that the medicines will go on for a long time, probably life long. I have been on medicines since then and have never defaulted.
Do you really know what SLE is and how serious it is?
Yes I do. I have been admitted 4 times over the last 10 years. I did wonder why me.. Later , I realized, rather than fighting ,I might as well learn the basic nature of my condition and considered it ‘living with my evil twin’. Now I know how to handle it to a certain extent. Its better ever since. Of course, itsbeen so many years.
How did your parents handle it?
My parents were devastated initially. They behaved like as though I was diagnosed with cancer. When doctors said ‘life long medicines’ they became a lot more anxious. But like I said, its been so many years and they too sort of understood how to handle it. My Ma ( mother) is not very educated and is comfortable staying within the house itself. As I needed to visit hospitals frequently (initially) and as Papa couldn’t afford leave from his work place, Ma took me instead. From getting into the right bus, to managing hospital bills , to handling the many pills I had to take initially, to discussing reports with doctors, she has shown tremendous strength, even to my disbelief. She knows more than my Village nurse now.
So your family is quite comfortable and supportive ! That’s great right?
They used to worry about my future and how they can afford treatment for a long time and support me even physically. Later they realized that SLE won’t necessarily decapacitate me as they worried. They even told me to just look at it like a person with diabetes. They too need to take medicines for a long time and they too need to take care of their lifestyle, else it may turn out to be harmful. From what we were ten years ago to now, we all have learnt to accept this ‘evil twin’.They do worry about my marriage though. I suppose all parents do!
Do you feel like you missed a lot of opportunities in life, living with SLE?
I did miss going out with friend to play initially. I used to play throwball in school, but my parents wouldn’t let me out to play as much as they would earlier. Even here in palakkad, when my friends go out trekking and bike riding, I do feel a little restricted that I can’t go with them..You know that probably made me develop a passion for theater events and dancing. I love them as much as I love throwball now .I think I am a better dancer than throwball player!
Did SLE have anything to do with you becoming a doctor?
Actually yes. There were a lot of postgraduate doctors and interns at the hospital where I used to go earlier. Since I was a usual face in OPD, we sort of struck a cordial relationship. Ofcourse , they used to ‘take my case’ for presenting at their classes. I used to be called for their exams too sometimes. By thetime I was in 10th standard, knew what a malar rash was and ANA was and also a little about the medications too. I suppose I developed a little fascination towards the subject then. I hope to do post graduation in medicine after internship
What lessons did you learn from SLE?
I learnt to be better disciplined and to take care of myself better. That’s the greatest lesson I learnt. Be it following a healthy diet or sleep hygiene or avoiding sunlight.
I suppose certain roadblocks in your life will lead you to newer roads you wouldn’t have taken otherwise. May be the theater events I take part in, the medical career I am purusing now, the respect I get in my village as a doctor wouldn’t have happened , had I not coped up with SLE along with my family
To rise up when situation arises was probably what my parents learnt . They are proud of me. There will be hurdles on the way but we are stronger together.
We finished our coffee. We strolled back to the OPD.
Many people try to sugarcoat their chronic illnesses and personal miseries or victimize themselves especially in their conversations with a stranger, so I have seen. Here was a girl who genuinely embraced life as it is and is emerging a champion. Shikha is setting an example to all the teens out there who are battling SLE. May this roadblock you are facing now ,make you take a better alternative path in life and may you grow stronger, as a person, as a son/daughter, as a professional...
