Blog

A Butterfly in the Dark

by Jennifer Dellow

“Yes, but Dave, what is it, what does it mean for her?”

Those were my mother’s words. I was sitting in a hospital reception having just come from my appointment. My dad was on the phone to my mum telling her that I had been diagnosed with Lupus. I was 16 years old and I had been noticing for a while that my joints were becoming swollen for no reason and I had started to develop a rash across my face. I later learned that this was known as “The Butterfly Rash” due to its shape across the bridge of the nose. Such a pretty name.

Fast forward and I am now 29 years old. I’m going to be honest and say that I never fully understood my condition until two years ago when it literally slapped me awake. I was immediately put on a cocktail of medication when I was first diagnosed and had been dutifully taken them daily. Then, at age 27 I’d had enough.

Years of not being able to be out in the sun, getting fatigued if I had to climb stairs more than once during the day, and constant weight gain had smashed any self-confidence I had left. I couldn’t drink alcohol, I couldn’t eat certain foods, and I couldn’t have children. Whilst engaged to my now ex-fiancé, we were given the choice of trying for a baby before I was going to be put on a drug called Methotrexate. This drug was mainly used to treat cancer, and due to its numerous side-effects, and its strength, you mustn’t get pregnant whilst on it. So there I was, at age 19 attempting to conceive a child that perhaps we wouldn’t have even been trying for had this option never existed. It took its toll. Neither one of us was ready, and we both knew that we weren’t happy with this but thought we were doing the right thing, because who knew what the future held? Having then decided to stop trying, I went on the medication and it began to kill my white blood cells, whilst we killed the relationship.

I felt in limbo. Half my decisions were being taken out of my hands due to my condition and the other half were whizzing past me due to my indecisiveness. I completed my University studies and left feeling cheated. I had been looking forward to going to college since I was 8 years old. I imagined the atmosphere, the classes, the social scene…it was everything I wanted: the ability to study, have fun, and make lifelong friends whilst cramming my brain with more knowledge. But it wasn’t like that at all.

Whilst I did get my degree, I was isolated. Some of the months spent there, I was in and out of hospital having my medication adjusted. I couldn’t soak up the atmosphere as most activities revolved around alcohol. I spent my days in classes and the night in the library. I am not a solitary person; as much as I do like certain time alone, I don’t want it to be permanent. But those three years were the loneliest years of my life. Even now, writing this and thinking about it, it upsets me because I have no happy memories of being there. I was suffocated by my own silence which filled my room. It wasn’t supposed to be like that and I grew resentful. I refused to have a Facebook account purely because I didn’t want to be updated at how great everyone’s lives were. I spiraled into a depression and moved back home. I became a shadow of myself; I carried my university years with me. Even though I was with family and friends, I still had that cloud over me. I had lost my ability to laugh, to enjoy company. The same company I craved at University, I was shunning now because I didn’t know how to react to them.

Deciding that enough was enough I stopped taking my medication. Things couldn’t get any worse than they were. I mean, I had been on those medications for 11 years and my joints didn’t fully work, I couldn’t be in the sun, I couldn’t move some days because of the pain. Plans with friends and family were cancelled at short notice to the extent that friends just stopped calling because the chances of me being there were slim to none. Clearly, this medication wasn’t doing anything, so why bother dealing with all the side-effects? Why must I be sick every morning, collapse on the sofa every afternoon and generally have this feeling that I’m not quite well every day for no benefit? So, in November 2011 I stopped.

For the next few weeks I was on Cloud 9; nothing seemed different and I was convinced that I was making the right choice. On Boxing Day, I went to my brother’s and his family for dinner. The kids played with their toys that I had bought and he and my dad took photographs. During the evening, I didn’t feel right; I was burning up inside. I felt like my skin was hot to the touch and there was a fog filling my brain. Pushing my condition aside, I convinced myself and others that it was a cold and nothing more.

By New Year’s Eve I was in Accident and Emergency, having collapsed at home. I had lost the use of my legs, and I honestly believed that I was dying. I was wheeled into the ward where they proceeded to take blood from me. My arms and wrists were bandaged up and I was placed on a drip. Two days later they attempted to drain a build up of fluid from my knees; they hoped that this would rectify my inability to walk. I was in a haze, drugged up with very strong antibiotics, my restarted Lupus medication and a drip. Everything just seemed surreal. I remember seeing two doctors taking a knee each and draining as much as they could. I was in hospital for a long time and off work until May 2012.

I had to rehabilitate my legs in order for them to work again. I spent the days with my parents who looked after every aspect of my existence whilst I was chair bound. I cried (lots), I got angry (twice), I was sorry for everything I had done. My parents never brought it up though; they spent the months caring for me and making me laugh again. They never blamed me for putting all this concern and worry onto their shoulders, which they had a right to do. Speaking to them afterwards, they said that they didn’t blame me because it was something that I didn’t envisage happening. All those years of suffering was bound to have taken its toll.

That’s when it hit me. That’s when my Lupus stood up and slapped me awake. It was a part of me and nothing could change that. But what I could do was live, I could be happy; I could do anything I wanted if I put my mind to it. Yes, some things might have to be adapted, so what? Surely that’s better than sitting alone, and waiting, watching the years pass. So, I reconnected with my friends, I enrolled on a Master’s Degree, and you know what? I smiled as I signed up to Facebook.