Natalie Wright, who has juvenile idiopathic arthritis, is 21, and recently had both hips replaced while studying for an occupational therapy degree, which she has just completed. She tells her story to Arthritis Today.
It is very uncommon for someone my age to have a hip replacement, and many people fail to understand the difficulties a younger person has to face when living with a chronic condition, especially one that is worsening.
Few people actually understood what I was going through, and it was very hard – emotionally and physically. Due to lack of knowledge of how my arthritis was affecting me, people still expected me to do things that I really couldn’t. I hope that by highlighting my experiences of having arthritis and hip replacements whilst at university, it will give a better insight into how younger people are affected by illness.
I developed arthritis after a viral infection at the age of five. I started steroids which seemed to work well, and in 2003 I was put on etanercept injections. From then on my life seemed to go very well. After A levels I wanted to go to university and become an occupational therapist and I felt well enough to be able to go.
"I needed a replacement"
My first year of university in 2004 went really well; I made lots of friends and had fun! But when I started my second year my left hip began hurting when I walked. I thought it was nothing I couldn’t handle. Over Christmas 2005 it got worse. I saw my orthopaedic consultant who said my hip was showing signs of severe degeneration; I needed a replacement. At this point I was still active, and convinced myself that I’d be OK to wait to have the operation in summer 2006. The thought of having a hip replacement really scared me. I didn’t want to have it unless I absolutely had to.
January 2006 came, and I could not walk for more than five minutes: my hip locked on sitting, making it hard to walk or get up from a chair without being hunched over and limping.
In February we all passed an exam and arranged to go out to celebrate. I told myself I would be careful; sit down and not dance. The night started out well, I saved my energy, despite wanting to dance with everyone else. By midnight, I felt shattered and was stuck watching everyone having a great time, so I ended up leaving. The next day I couldn’t walk. I dosed myself up on painkillers and had to use my mobility scooter to get from my room to the toilet, only seconds away. I felt angry, because I now knew that every part of the life I used to love I now hated because everything seemed to be dominated by the pain. I couldn’t do anything anymore.
I now wasn’t able to go out with my friends, go shopping, or walk around campus. I had no choice but to use the scooter to get around, but I hated it. Normally I hid my arthritis well; few people had ever noticed that there was anything ‘different’ about me and I liked it that way. I had always hated anything that drew attention to my illness or showed people how I wasn’t like them.
"I was in denial"
My academic life was suffering as I was constantly tired and always drowsy from the painkillers. Doing coursework was difficult, as I just stayed in my room and slept. I missed days and had to catch up. I think I was in denial, believing that as I had coped with pain before, I could cope now, convinced I didn’t need the surgery. At the time I felt waiting was the right thing to do. The thought of being set back a year at university for something that wasn’t my fault was in some ways my motivation to continue and a way of me controlling something for a change.
But by March 2006 I really couldn’t kid myself any longer. I couldn’t cope any more and university was becoming a nightmare. I still feel sad that I lost out on a lot of my university life in that second year; I’ll never get that year back. I kept in contact with my friends but I couldn’t feel a part of things like I did.
I had my operation in June 2006 and the pain immediately disappeared, which was a really strange feeling. The pain had become a part of my life – I had been experiencing it everyday. Afterwards, I was completing four hours a day of physiotherapy alongside hydrotherapy. I still felt as though I had no life, as my life had become filled with the exercises I had to do to get my hip muscles strong. I found myself in a really low state, and one night, the realisation of the operation I’d had suddenly hit me, and I felt nobody understood what it was like. As I didn’t get to see many friends or family following the surgery, I was convinced that nobody cared. At this point I was feeling physically well and I was dying to get back out with friends, but due to the precautions I was following for 12 weeks I couldn’t. Now the pain had gone I just wanted to be free...be normal...and get on with my life.
As I had missed my clinical placement in April, it now seemed possible to still complete it over summer, after my operation. A local placement was arranged, which I began eight weeks after my surgery. Needless to say, at eight weeks the placement was a struggle. I was battling fatigue due to my lack of energy combined with my rehabilitation and I was faced with issues regarding self image as I was using walking sticks. Again, this was something that drew attention to the fact I wasn’t like everyone else...somehow, the sticks made me feel more vulnerable and less capable than I normally felt when on placements. I felt shadowed by them and by the association of being ‘disabled’. Also, no sooner had my hip been replaced, the other hip began giving me problems. This made the placement even more difficult as I was now facing another problem on top of my recovery.
"I had my second new hip a week after I graduated."
The surgeon said this might happen, as once the restrictions on the left side had gone the right side was now ‘weaker’. However, it wasn’t a huge problem, so I began my third year in September 2006.
The right hip lasted much longer than the left. Because of my previous experience, I took things much easier avoiding anything that would aggravate my hip, and I knew how to pace myself and deal with difficulties around university. I really saved my energy for the things I needed it for the most. I managed to complete my degree without having the surgery...just! I had my second hip a week after I graduated.
Now, both hips are feeling great and I am doing so much more than I have done for a long time. I have been on day trips, long walks and long shopping trips – something I had greatly missed!
The past two years have been the hardest of my life but I never wanted to let my arthritis get the better of me. I am glad that I managed to finish my degree on time and with a good result. One thing I will say to others with chronic conditions is, just because you have an illness, do not let this affect something you want to do. There is always support and ways to get around a problem.
I pursued my career path, and although I had hurdles along the way I still did it. I proved to myself and others that I WAS capable of getting a degree, I just had to alter my course a little on the way…