“Move towards the ball!” shouted my friends, as I struggled to limp towards their simple passes on the football pitch.
I was 18 years old, but I felt like I had the body of an 80 year old. I couldn’t play sport. I couldn’t walk up the stairs properly on some days. It even hurt to take deep breaths. Anything which involved some degree of movement – I couldn’t do.
Looking back, it was obvious that something was seriously wrong with me.
At the time however, I couldn’t see it. Instead, I attributed it to my appalling levels of fitness. After seven years of not doing any form of exercise consistently, my fitness levels were at rock bottom.
When I was 12, I had quit my local football team because I couldn’t do the required running during training sessions. I had won ‘Player of the Season’ the year before. How had this happened?
“Growing pains,” said my doctor. I got told this not once, not twice, but on three separate occasions.
I’m sure you can imagine my frustration; seeing all of my friends running around, playing the game that I love – football – but I was in too much pain to join in. Not to mention the fact that my friends didn’t understand what I was going through, and so I was branded as ‘lazy’, instead of being given sympathy for the debilitating illness which I had contracted.
Not that I blame them, as I myself didn’t know the extent of what was wrong with me.
Road to Diagnosis
It was probably my love for football which led to the escalation of the investigation into what was wrong with me.
A year or so earlier, I had been diagnosed with ‘high-hamstring tendonitis’ by a physiotherapist, who gave me a number of stretches to do. Whenever I knew that I was going to be doing exercise, I would do the stretches the day before, in the hope that it would allow me a bit of movement. It rarely did.
In July of 2015, my friends had organised a game of football to be played the following week. I was desperate to play. I stretched three times a day for a week in the hope that I’d be able to partake. But when the day came around, it wasn’t to be.
I walked outside into my garden that morning feeling quite nervous. This meant a lot to me. I found a ball in the bushes, and put it down so that I could line up to kick it. As I walked up, I could feel that my stretches hadn’t worked, and my efforts for that past week were in vain.
As I kicked the ball, my leg buckled. I was in absolute agony. Not only did I realise that I wouldn’t be able to play football that day, but the penny dropped that something was seriously wrong with me. This wasn’t normal.
At around the same time, my mother had been at a medicine conference as part of her job as a pharmaceuticals sales rep. At that conference she heard a speech by one of the country’s leading neurologists, Dr. Mark Roberts.
“If you’re ever told that someone has growing pains, bring them to me,” he said, before emphatically stating, “It does not hurt to grow.”
This set alarm bells ringing in her head, and she immediately pushed for a referral for her son to see the man himself.
In the build-up to my appointment to see Dr. Roberts, I was losing my mind. To be honest, I was petrified. I’d convinced myself that I had Multiple Sclerosis, or a form of muscular dystrophy. It had gotten to the stage however, where I just wanted to know what was wrong with me.
The appointment is a bit of a blur for me now, but I remember Dr. Roberts running some reaction tests (the first of many for me), and then ordering an MRI scan, just for my peace of mind.
Anyone that has had an MRI scan will tell you how much of a horrible experience it is. I was stuck in a tube for 45 minutes, unable to move a muscle due to the risk of ruining the accuracy of the scan.
A couple of weeks later, I was called into his office for the results.
“Your brain is fine,” he said, as I breathed a huge sigh of relief, “but we did find some inflammation on your back which we need to take a look at.”
At this point I was just glad that I hadn’t received a death sentence, but the uncertainty remained – there was still no diagnosis in sight.
Dr. Roberts referred me to a rheumatologist by the name of Dr. Hector Chinoy, who he described as ‘one of the best’.
I felt a lot less nervous when I went to meet him than I did with Dr. Roberts, probably due to my fears over having MS being allayed.
“Right, Jordan,” he started, “The first thing we want to rule out in young men with pain like yours is Ankylosing Spondylitis.”
He didn’t really tell me what it was at this stage, but asked me to go through all of my symptoms so that he could make an initial judgement.
As I finished speaking, he put his pen and notepad down and said: “I’m almost certain that you have Ankylosing Spondylitis.”
Questions began to flow through my head – What is it? Is it serious? Can it be cured? In all the hours I spent googling for a self-diagnosis of my illness, I had never come across this term.
He told me that Ankylosing Spondylitis (AS) is a long-term, chronic condition in which the spine and other areas of the body become inflamed. The bones of the spine gradually fuse together, and if left untreated, could leave me in a wheelchair before the age of 50.
There is no cure, and there is no way to reverse any damage that has already been caused.
He ordered another MRI scan to be sure, and this confirmed his initial diagnosis. I finally had my diagnosis, but it wasn’t a good one.
After filling in a survey based on my levels of pain, I was told that I was eligible for a treatment called Humira.
Humira is injected by those who use it to reduce the effects of auto-immune disorders by weakening their immune systems.
This of course comes with lots of risks, but at that point, I just wanted to get better, and didn’t pay much attention to the drug’s side effects.
Unfortunately, Humira costs £10,000 per year and so I had to go on an NHS waiting list for four months until I could access it.
This four month period was probably the darkest time of my life.
Knowing that I was ill probably exacerbated my already unbearable symptoms, and so I had to take steroids and painkillers to even go into my classes at University.
Imagine waking up every day feeling like you had been hit by a car. That’s how I felt.
I knew that something was wrong with me. I knew what was wrong with me. I knew that something could be done to help me. But I had to wait. I was in purgatory.
Those of you that know me personally will know that I am generally a very happy, sociable person, but during these four months I was depressed and reclusive.
Finally, the day arrived for me to take my first injection. I was so excited.
A nurse came to my house and showed me how to inject the medicine into my thigh, and it was incredibly easy to do. It hurt a little, but I knew that it was worth it.
I noticed changes within a few days.
I could walk up the stairs in my house without having to hold onto the bannister. I could go to university without having to take painkillers. Small things, but I knew that I was finally on the mend.
Today is the first anniversary of me being on this treatment.
It has changed my life.
My pain has virtually gone. I play football twice a week.
I can run!
It’s amazing. It may not seem that amazing to those of you who do not have the disease, but trust me, these things were near-unthinkable just over a year ago.
I got lucky. Humira was only created 15 years ago. If you had AS prior to that, you were told that nothing could be done for you except for anti-inflammatory tablets and physiotherapy.
I am a part of an AS Facebook group, where people are far worse off than myself. There are people with this disease who are unable to dress themselves, people whose marriages have been ended due to AS.
There was recently a discussion in the group about whether sufferers of the disease would rather have AS or cancer. That is how bad it is for some people.
While this story seems to have a happy ending for me, it is far from over. There is no cure for my disease. Humira is merely masking my symptoms, and one day, I could develop a resistance to it.
Until that day comes, however, I am just going to continue to make the most of being able to move, something which I will never take for granted again.
words by Jordan Elgott