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Gagan's Story

I was diagnosed when I was 18 I am now 22.

I had never heard of LUPUS let alone Systemic Lupus Erythematosus (SLE) and none of my family had been affected by it or even had any knowledge of it, but it was a word that changed my life forever.

gaganpicI was enjoying myself being a teenager, working and having fun with my friends.  One day I woke up and my hands were incredibly stiff and difficult to function, I didn't think much of it at the time maybe I had over done it at work? I told myself.  So I simply got up, went to work and continued my day as usual after all it was only a bit of stiffness in my hands. But as I arrived at work a simple activity that most people wouldn't think twice about, such as pushing open a door or holding items in your hands became suddenly, extremely difficult. That's when my managers decided the best option for me was to go home. That was the first sign I knew something wasn't quite right and I knew I had to go to see a doctor. The doctor told me it was a simple case of tendonitis and that was that.

After a while it got better and I carried on working, but a couple of months after I found myself awake at 4am. I was unable to move my entire body including my fingers, it was agony even to lift ONE finger, and I just lay in my bed crying unable to comprehend what was happening to me. I had never been so scared, it was as though I was paralysed, I just lay there crying unable to even shout for help just crying in shock gasping for breath, I slowly managed to get out of bed at around 2pm, I slowly walked downstairs where I told my mum and sister. I couldn't understand what had happened to me and why?

They took me to the hospital where I waited. What felt like a lifetime was only a couple of hours. When the nurse saw me she just said "it's probably the flu but there is a long wait as a little boy had just been brought in, in a critical condition". When I heard that, it put everything in perspective, I   didn't wait to see a doctor, what I had seemed so insignificant as I thought it was the flu, compared to that of what the poor family of that little boy must have been going through.

I didn't seem to get any better, I would wake up every morning with my whole body aching, it's so hard to explain the pain I was in, my feet and ankles would be swollen, my hands so sore and stiff that I couldn't even bend them to make a fist and unable to do the simplest everyday mundane things that most people take for granted like holding a cup and bending down to pick something off the floor.

When I was finally referred to a specialist, a rheumatologist, he diagnosed me with lupus, Systemic Lupus Erythematosus to be exact.

What's lupus?  How did I get it? Am I going to get better? So many questions kept running through my mind, apart from my doctor only answering some of these I decided I had to research my condition by reading stories about other people with my condition.  This gave me some relief and reassurance that I was not alone and my research made me become my own doctor. I researched the scientific explanation of lupus the possible medication and the best diet and exercise activities to strengthen me and my fight against lupus, I knew it was going to be an ongoing battle but I was making sure I was best prepared for the fight. I researched the best foods to strengthen my immune system.

I was very poorly for a very long time my ankle, hands, knees and feet swollen, although I was so ill hardly able to walk and hold a knife and fork to eat, a cup to drink, I still carried on going to work no matter how ill I was I was not going to let lupus defeat me but I soon realised me pushing myself so hard held serious consequences, it resulted in me ending up in hospital, I was already on hydroxchloriquine and predisolone but they upped my dosage and decided to also put me on methotrexate.

As well as having the butterfly rash and extremely dry skin the medication made my face big and round, I felt so unattractive and the ugliest person ever and for a 18 year old girl this was the worst feeling in the world I felt I had lost who I was, I had lost my independence.

Being taken to hospital was the worst experience, it was a huge shock that lupus isn't something to be taken lightly and I couldn't keep pushing myself the way I had been. It made me realise I wasn't like everyone else although I was me lupus was a part of me now and there was no escaping it. Having regular blood tests and seeing the specialist regularly soon became a regular routine. I had to take care of myself especially in winter when my hands would turn blue due to Raynaud's.

My whole life was flipped upside down I was unable to do normal things slowly everything changed, I would cry in agony every day I fell into a state of depression, my periods were agonising and my blood pressure would drop so low that I would faint and I was thankful that I had my family especially my sister she was my rock, she would massage my feet, legs and hands everyday help me up the stairs for a year until I was able to function properly.

As I was unable to go out I lost people who were meant to be my so called 'friends', people that I had known my whole life, that I grew up with, that I cared about who I thought cared about me, had no interest in me, when I tried to tell them their words were simply "everyone has problems". That was a massive reality check for me that no-one will be there for me I had to take care of myself  but I was thankful I had my amazing family especially my sister. Everything that was happening in my life just made me stronger and stronger and more determined to achieve my goals.

I carried on working at my job as I had to stop fulltime education. At 20 I made a decision that I wanted to go back and finish my A levels and I was determined to do this I had saved a lot while working as I couldn't go out much  and decided to put myself through private education as I needed that stability. I enrolled at a private college and carried on with my A levels whilst also working part-time, this was going to be the start of my new life. For the first time my lupus was under control and so was my life, I hadn't told a soul I had lupus I was so scared of the reaction I'd get but I made an amazing group of friends and this year, 4 years on from when I was first diagnosed, now 22 I decided to tell them, they were unbelievably understanding and supportive, they don't see a woman with a illness they see their friend. My friends and my family give me the strength to carry on.

It's hard for anyone with lupus, getting people to understand, but especially for a woman, a British Asian woman. People tend to avoid the subject, I got stared at a lot but it all made me stronger.

 Every day is different for me; even though I have lupus I am still able to live my life.

 Lupus doesn't have to control you, you can control lupus, even though I have this condition I can't see myself living any other way it is a part of me and made me the woman I am today.

I have my whole life ahead of me I know it's not going to be easy and I have to take it day by day, step by step, but I won't ever give up I'll keep on fighting and I hope I will meet more amazing people just like the people already in my life because when I lost my way they gave me the strength to carry on. We fight every day, we fight an invisible battle.

I believe everything happens for a reason, it's not what happens to you that determines how far you go in life, but it's what you do with what happens to you. It has taught me not to take anything for granted and to be proud of who you are.

Remember individuals will always be afraid of what they don't understand and lupus is very much misunderstood.

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."

Last updated June 2011