“I Was In Pain When I Got Up, Sat Down, Walked”: My Story Of Living With Lupus Disease

Posted on July 24, 2015 in My Story

By Sana Rana:

After spending a month visting doctors and trying to figure out what was wrong with me, we finally had a diagnosis on 27th December 2003 – Lupus or SLE (Systemic lupus erythematosus). You probably have a blank look on your face right now – that’s how we reacted or rather my parents reacted when they heard the name of the disease. Though it’s not that uncommon, people just aren’t aware of the disease and yes, that includes doctors. Usually patients are diagnosed wrong and treated for things like TB which screws up the patient beyond belief and it gets harder to save them. I, luckily went through the right channels and reached the right doctors who are still with me today, ten years down the line. I am a 24 year old graphic designer who loves photography, books, music, movie marathons and putting up occasional dance shows while cooking and this is my story or a part of it!

The butterfly rash, a common symptom for Lupus. Image source: flickr.com
The butterfly rash, a common symptom for Lupus. Image source: flickr.com

Now, what exactly is lupus? Put in the simplest terms it’s basically your white blood cells malfunctioning. The purpose of the white blood cells is to protect the body but when this disease hits you- they start attacking the body instead of protecting it. So basically, it’s a multi organ disease and can affect the patient in many ways. Like me, for example, my kidneys are damaged, I also deal with symptoms of arthritis and also avascular necrosis (AVN) of the bones, which means that the blood supply to my bones are faulty, affecting both my legs (including hips, knees and feet). AVN wasn’t a part of the disease per say.

However, to fight the disease you are prescribed steroids at a very high dose and one of the side effects of the steroids besides the horrendous weight gain is that they damage the bones, which not many people know (so, all you people taking steroids to bulk up—I would suggest you stop because you are heading for the kind of damage you don’t want). The catch with this disease is that since the doctors don’t really know the reason for the disease, they don’t have a cure. All they can do is keep me, the patient, stable and thankfully I have been stable for the past few years.

When we found out about the diagnosis, I was twelve, too young to realize how it was going to impact my life. I was more worried about how I had to give up on dancing and how fat I looked having gained around 10-12 kgs overnight and how kids would make fun of me. That was a lot to deal with for a teenager. Kids can be cruel and so can adults. Rumours started spreading that I was faking it- that it was a plea for attention. I remember hearing that even one of my teachers thought I was exaggerating but they didn’t realize that those crutches weren’t just for show. I was in pain when I got up, sat down, walked. I became this girl who would barely talk to anyone—who would always be found with a book in her hand during lunch. Now when I think about it, I feel sad but back then I was okay—I didn’t mind it. My parents were supportive and I did make a few friends who somewhat understood my problems- or atleast tried to. The principal of my school was very supportive. If it weren’t for him I wouldn’t be here today. He helped me through spots where most principals would have just let go. What the younger me failed to see was that there will be so many opportunities that I would miss out on because of the disease. That I won’t be able to take the career I wanted and instead settle for something else, which still bothers me.

Yes, I have gone through a lot in my short life. Probably more than most 24 year olds and yes, maybe I was a little brave, maybe I still am, because it does take a lot to go through constant pain plus deal with the society, doesn’t it? Not that I haven’t broken down. Oh, I have, so many times. But I guess me being here still counts as me fighting, right? No, I don’t hold grudges against anyone. We all were kids- I just had to grow up a little sooner than everyone else. Lupus changed my life as I knew it – it changed me, and on some level I am kind of thankful about it. It made me more sensitive to other people and their issues. It made me who I am today. So yes, the disease wasn’t the best thing that happened to me, but it wasn’t the worst thing either.

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