A.S. Face 1400: Chris Hide
Hi, my name is Chris Hide, I am 29 and from West Sussex, UK.
I was officially diagnosed with Ankylosing Spondylitis in 2011 after struggling for years without understanding the cause of my symptoms.
Having been at the bottom like everyone who suffers with AS has been, I am happy to say that I am slowly moving forward and feel that I would now like to share my story like so many others have already.
I will begin with telling you a little about my life before AS took over.
At age 18 I began my career as a professional vocalist after appearing on the 2003 reality television show, Pop Idol. I was very fortunate to do well with this and ended up being able to make a living for myself for a number of years. Music officially became my life and I spent my time both performing and writing music and very much enjoying so.
In 2010 the condition started to really make itself known to myself and everyone around me.
One particular day I found myself in crippling pain and ended up on my back on the floor not being able to move. This was a hugely terrifying and confusing experience as I was completely unaware of what was happening. Obviously I ended up in hospital and after a long process the situation was still not clear.
During this time I was involved in something that required a lot of movement and dance. A while into it I found myself in a horrible situation one morning when I could not put any weight on my legs. I was scared to death as most people would be and unfortunately I found that my legs really started to prove a problem for me.
Another huge part of the AS was back spasming. This is something that I would not wish on my worst enemy, as they say, as it was chronic pain like I had never experienced. As I had always said, the only comparison I could think to make to describe the pain was that I would imagine it was like someone was using a defibrillator on you. The pain would repeatedly swell up within a certain point in my back and it would erupt in excruciating pain which would send me crashing to the floor if I was standing and leave me convulsing on the floor. These would repeat over and over and would last for hours on end. These were experiences that I wish to never have again and which unfortunately had me questioning suicide when they would happen. They were very difficult times and I am glad they are over.
On a slightly more positive note, I was diagnosed the following year and I began on a lot of medication to help attempt to stabilise my situation. If I’m honest, when I was told about the condition I had from my consultant I completely zoned out and heard nothing of the rest of the conversation as it felt like he had told me my life was over. Obviously I later started to take some interest in what AS was and felt reassurance in that I had a name I could finally put to what had been going on.
So unfortunately my career as a musician came to an immediate halt and that was obviously very difficult to deal with, however I needed to concentrate on the current situation and how to get to a better place with the help of the hospital and family and friends. Having been a complete needle-phobic for my entire life I cried all the time with the constant blood tests I had to have, but in the end I stopped being such a little girl and actually found that I’d gotten over something that had terrified me for so many years. Unexpected bonus there haha. The decision was then finally made that in 2012 I would begin anti-TNF injections that I now self-administer once a week. They hurt like nobodies business, but if you would have told the younger me that I would be doing it every single week for the rest of my life I would probably have had a fit… yes, I have epilepsy too haha.
Another situation that I found myself in was complete unemployment, and that combined with pride was a recipe for disaster. For a long time I refused to approach the job centre in regards to financial support as it honestly made me feel like a thief and that people would look down on me further. It took many discussions with people there and at the hospital to make me understand that DLA was something I was applicable for. Because of this help I felt like I had a small amount of a life which enabled me to live and do the essentials. It would be a struggle without this so I am eternally grateful.
An ‘invisible’ disability is something that can be very difficult to experience day in day out, as people cannot feel the pain you are feeling and often think you are exaggerating and moaning without real reason. This can be incredibly hard to handle emotionally as it was for me, but I found I had to learn to understand that people don’t take an awful lot of notice of words when they can’t see what you are describing. I was once told I was lying when I had to explain to a train ticket guard that I needed to sit down. But, never mind, onwards and upwards haha.
Fatigue is now something that affects me greatly. I am forever exhausted physically and otherwise, and could honestly sleep for days at a time. I did spend a lot of my time worrying about how much time I was wasting doing very little, but I soon learnt to appreciate things and to find pride in achievements that may not seem a lot but that are definitely worth celebrating for someone with AS and other such disabilities. Whether I have coped with a long day out, cooked a simple meal, or managed to successfully entertain my niece and nephew for an afternoon, I applaud myself for all of these types of things that a few years ago I could not move my head to accomplish. Although it is upsetting to think of what I have been though, this is why I remind myself of where I have been and how far I have come.
Now, with a lot of drugs to aid me I am in a better place where I can now look forward instead of only at the present. The pain is still a problem as it will always be, however, it is contained and therefore I don’t experience such extremes. I do feel like an 80 year old man a lot of the time with such intense arthritis which affects my entire body, but it’s something I have learnt to live with and will continue to do so. Every day is a new challenge and I never know how I will feel so I just do my best to keep on smiling and do as much as I physically can.
I am restarting my career as a musician and am enjoying the few gigs I am doing at the minute. I am finding a huge amount of fulfilment in getting back to what I know and love in a way which suits my physical state. I have also recently starting advertising as a wedding and events singer through Facebook and http://www.chrishide.com and am really looking forward to this progressing for me further.
Ankylosing Spondylitis is obviously an incredibly complexed disease so many of you will understand that I am highlighting specific circumstances and areas from my experience, but I would just finally like to thank all of you for reading my first ever post about AS and supporting ‘The Faces of Ankylosing Spondylitis’. One day I hope this condition will be universally recognized and I will finally get that person who doesn’t ask me to repeat its name because it’s long and they’ve never heard of it, haha.
To those of you with AS, I wish you all the best through each day to come, and to our supporters, I send out a huge thank you from us all.
England, United Kingdom