Part One Of My Diagnosis Story: Getting Diagnosed in China
I thought I would share my diagnosis story with you guys for two reasons. Firstly, because it’s a pretty unique and crazy tale and secondly, to show to anyone who has recently been diagnosed that no matter how terrible your situation seems now, it won't stay like this forever. Things will get better.
How it started
Back in 2019 I was working in China and had recently taken a new job working in an office; something I had never done before. Previously I was teaching in a kindergarten and spent every day chasing after kids. Sitting around in a chair all day was a drastic change for me.
I started getting back pains, which I originally thought was from sitting for hours in my office chair. The pain refused to go away so I dragged myself to the doctors to check up on it.
He believed it was a muscular problem - something I took as somewhat of a compliment; my workouts were clearly starting to pay off.
He suggested that I take some muscle relaxers and invest in a memory foam mattress. I also tried some acupuncture and Chinese herbal medicines, which gave me some temporary pain relief but my back continued to give me grief.
New year, new problems
Chinese New Year was fast approaching which meant a month's holiday from work. I had planned a trip backpacking around India which I was very excited about. I found out that there was a good shop for backpacks around 3 miles away from my office and decided to walk there after work one day to buy one for my trip.
All of this walking exhausted me - my back had tightened up and I was in a lot of pain - so I decided to get a cab home and have an early night.
Unfortunately, my plans of seeing the Taj Mahal and eating paneer all day didn’t happen as the next day I woke up in excruciating pain. I felt a gravitational force of pain holding me down in bed and found myself engulfed in my memory foam mattress.
Fortunately, my housemates were able to hurl me out of bed and lift me into a taxi to get to the hospital. By the time I arrived there every joint from my hip down had tripled in size with inflammation and my spine was rock solid. Every inch of my body was in agony and I actually had a panic attack whilst trying to climb the stairs into the hospital entrance from the pain.
The doctor took one look at me and told me there was no way he could let me go home in the state I was in. I would have to be admitted while they ran some tests on me. However, I was unable to get myself onto any of the scanning equipment as I was too immobile to lift myself onto them. I couldn't use a crutch or a wheelchair as no metal was allowed in the rooms and they did not have any mobility aids made from any other material. They were only able to run blood and urine tests on me.
As I was wheeled into my hospital room, the doctor took a look at me and without thinking that I could understand Mandarin, asked the nurse pushing me: "Has this foreigner hurt himself drinking?" I joked back in Chinese that I hadn't but if he had any on him I would appreciate a beer. It didn't land as well as I had hoped as I think he was too embarrassed that I understood him, but it was the first of many times that people had downplayed my condition.
I ended up staying there for about a week, which wasn't ideal as it constantly smelled of smoke and as nobody was capable of lifting me to go to the toilet, I was forced to urinate into a pot that a nurse would hold on my lap.
Finding out I may have AS
Then one day I was woken up and casually told that I potentially had something called "ankylosing spondylitis" and there was nothing this hospital could do to help me. I had to drag myself over to a specialist hospital to be treated.
This was pretty terrifying as it was such a long word for a condition, and in my head I believed that the more syllables a disease had, the more deadly it would be. I was also in a country where Google was blocked so I had to message my parents back home to research what it was exactly.
They informed me that it wasn't the death sentence that I had convinced myself it might be, but it was still very frightening. The specialist hospital was closed by the time I was released so I needed to go home until the following day.
I have no shame in admitting I had a bit of a breakdown on that cab drive home. Being told I had a life-changing condition in a foreign land whilst still very confused about why my body was not working and in so much pain got the better of me.
Off to the "specialist"
As I couldn't even say "ankylosing spondylitis" in English correctly at this stage, I thought it would be a safe idea to bring along a Chinese friend with me the next day to help communicate with the doctors easier.
After a painful few hours waiting around to be seen in a jam-packed hospital I was finally called in to see the specialist.
He started with the good news: the hospital had the facilities to help my recovery. They had the medicines that would control my condition and they could put me on a physiotherapy course to help me feel better while I waited for them to kick in.
However, in a few days, it was Chinese New Year so all of these doctors were going back to their hometowns for a month and there was a waiting list. I would need to wait at least 2 months to be seen by anyone.
Time to go home
With the state my body was in, 2 minutes felt too long to wait for any medical assistance, let alone 2 months. I decided the best thing to do was to brave the 16-hour flight back to see my rheumatologist in London.
Before I flew back I organized a leaving party of sorts, where a lot of my close friends came over to hang out one last time before my inevitably painful voyage across the world. I really appreciated this and it made me feel a lot calmer about my situation.
I recently found out that I actually scared them quite a lot at the time. I'm not sure if this was because I was obviously in agony (despite my best efforts to play it down like the typical male I was) or because I was not drinking on a Friday night; either way, if you are reading this now I'm very sorry!
I'm also sorry to anyone reading this for ending this article on somewhat of a cliffhanger. I’ll be back with a Part 2 when I will explain what happened when I dragged myself across the globe back to the UK. I will however reveal the spoiler that I did indeed make an incredible recovery and am no longer the swollen and immobile mess I was (touches wood).
Editor's note: Stay tuned for part 2 of this series, coming soon.
Do you live with any other conditions in addition to AS? (choose all that apply)