Hi everyone. The second part of this month's blog has been written by Stephanie. She has shared her experiences of studying whilst living with lupus. Thank you so much Stephanie for taking the time to write your story for us.
My lupus journey began aged 15. I was taken ill during the summer holidays leading up to my GCSE year. Prior to being ill, I was very sporty and athletics was my talent. It seemed overnight I had gone from being a very “healthy” young girl, to a 90 year old, crippled with pain and fatigue. The psychological impact of this is indescribable. It’s like you are mourning the loss of your former self. One minute you have your whole life in front of you......in a flash it comes to a grinding halt....
Every joint swollen and stiff, every movement is agony, no amount of sleep is ever enough, weight disappears until you’re a skeleton and waking up drenched in sweat. I could barely get out of bed, walk or dress myself, crying with feelings of loss, worry and frustration. After a year of agony and hell, I was finally diagnosed with lupus. This was like a double edged sword. “Yes, they finally know what’s wrong with me” to “there’s no cure.” Luckily, my medication worked better than imagined. By the age of 21, I weaned off my meds and put lupus in remission. I am now aged 26, living life without any signs of lupus activity.
Secondary School
I could barely get out of bed; how on earth would I manage school? My family could see that staying at home wasn’t helping; they pushed me to go back to school. I rarely made a full week, I never had energy to do homework or revise. Just getting ready for school was agony. My Mum had to dress me as I couldn’t bend down to put my socks on or lift my arms to pull on my school jumper. Every day I would panic about how I would get through the day. How would I stay awake, find the energy, manage the pain and keep warm? Somehow I got through the worst year of my life so far and passed all my GCSE’s with grades A – C.
Lack of Understanding
With no diagnosis, trying to explain what was wrong with me was almost impossible. People could see I was ill but to nowhere near the extent. Most students would just comment on how thin I was, oblivious to the fact that you can get a chronic illness at any age. They were ignorantly sailing through life, more concerned with their image and social life. As for teachers, most were more concerned with my impact on target and absence records. I had one teacher who couldn’t understand why I was unable to do P.E. I loved sport, why would I not want to do it? In the end, I got my specialist to write a letter to the school explaining my circumstances. I felt my illness stood out like a sore thumb, but evidently many of my symptoms were invisible.
Isolation and Denial
What didn’t help matters was that I tried to hide my illness. It would take all of my energy to put on a brave face for school, holding in the pain and misery and trying not to walk like a cripple. By the time I got home I was a complete wreck, spending most evenings crying. My life had changed so much in such a short space of time; I couldn’t find the mental strength to get through it. At school I was quite a private person, but being ill just made me push my friends further away. I felt embarrassed. I used to be so fit and healthy, people still expected me to sprint down the track on sports day, but my body was so weak I couldn’t even lift the milk out of the fridge! I lost all of my confidence; I didn’t want to go out or talk to people, I lost interest in everything and just wanted to hide away.
Lost
I was lucky enough to have the talent of sport; this was my career, one thing I was really good. All of my dreams and aspirations went up in flames. The fear of how I would ever get to university, work, drive, go out with friends (all the things we take for granted) filled my thoughts on a daily basis. I was completely lost on my path through life.
At this point it was difficult to weigh up which was worse, the physical or psychological. Professionals were very much focused on diagnosing and medicating. No-one ever took the time to assess how this was impacting me psychologically. I must have cried every day for a year. If professionals had explained that my emotions were perfectly normal for somebody going through a major life event, things would have been a lot easier! As it stood, I felt abnormal; I couldn’t understand why I was coping so badly.
Sixth Form and University
By sixth form, I was starting to turn a corner and got my diagnosis. I found the lessons hard academically; I now felt I had fallen behind. I’d gone from a 90 year old to feeling like a child. Everyone was growing up so fast around me, I felt left behind. Everyone seemed so much more confident and getting on with their lives: jobs, career plans, partying etc. Then there was little old me. Feet too swollen to wear heels, too thin to wear short sleeves, and a face puffed up and ugly from all the meds. By the end of sixth form, Azathioprine took a firm hold, the pain eased and I began socialising more. I got 3 A Level C grades – not bad considering. At the last minute I applied for University to do Psychology, finishing with a 2:1 and went on to do my Masters in Health Psychology. I now work as a NHS Health Trainer, working with disadvantaged/hard to reach groups, to achieve a positive and healthy lifestyle (physical, mental and social).
On Reflection
It would seem I used education as a coping mechanism to keep me going throughout my experience. Being a keen sportswoman also came in handy; as being determined, competitive and a perfectionist meant that lupus had a fight on its hands. I am no longer annoyed or upset that I have lupus - I have accepted it. The experience has brought out some of my greater qualities; I am much more confident and chatty, love socialising and have a much greater network of support around me. I continue to make the most of life, making up for time I spent locked away in my bed, but never taking my health for granted!
We'll be continuing to share people's lupus stories for May and June We'd now like people to share their story about working whilst living with lupus and the challenges this created. If you'd like to share your story, please email it to paul@lupusuk.org.uk
One or two stories will be chosen for each month. Please send a photo of yourself along with your story.
therapy walk, day1 part 2
THE LUPUS FITNESS DVD mentioned in a blog from Twist
Mycophenolate Mofetil experience with lupus nephritis.
