James and René: Chatting About Running, AS Diagnosis, and More

One thing I’ve noticed on my journey with chronic illness is that no two spoonies have the same story. The same condition can affect everyone differently, both mentally and physically.

René Agterhof is a fellow Community Advocate for AnkylosingSpondylitis.net and was actually the first male that I encountered online who was speaking out about living with ankylosing spondylitis.

René's outlook on life with chronic illness and the amazing things he has achieved have inspired me tremendously and I was honored when he suggested that we interview one another. You can click here to see René's conversation with me, but I shall now attempt to recount my interview with him and hope that it does him justice.

How it began

My personal journey with chronic illness began at 21, which I always thought was outrageously young. However, after speaking to René, I realized I was an old man in comparison. He was 9 when he started developing AS symptoms. His ankles became inflamed and filled with sterile fluid which led to him being hospitalized for 6 weeks. At this stage, the doctors were still puzzled by his condition and didn't consider it to be an auto-immune issue until he was 12 and his SI joints and lower back became heated and inflamed.

Unfortunately, in the 1990s, X-rays were not advanced enough to detect inflammation and he had to wait until he was 15 to receive his AS diagnosis after damage to his spine was discovered.

School life with AS

After hearing this, I sat back in shock. When I was diagnosed at 21 I could barely understand what was going on and my greatest concern was how I would be able to go out and get drunk with my friends again. I can’t imagine how confusing and difficult it must have been for René to deal with all this at such a young age.

He told me that from the age of 12 to 14 was a very tough time for him. He was living with his mother and stepdad at the time. His mother was very understanding but his stepfather didn't believe just how much pain he was going through. René recalls that some days he was in so much agony he just couldn’t brave going into school and had to hide at home in order to give his body some rest.

It wasn't just at home where his condition wasn't taken seriously. His gym teacher forced him to take part in activities his body was unable to take on and ignored René's word and his doctor's note that stated he should not be running. It wasn't until his Dad made a visit in person that he finally permitted him to sit out on the exercises that were causing him so much pain.

It was heartwarming to hear that his friends at school wanted to understand his condition and would ask questions so they could learn more. "I didn't feel different, but I was fighting to be normal," he told me. I stared into the pixelated screen of our zoom chat thinking that "normal" was definitely selling this extraordinarily strong man (or child at the time) short.

Half marathon

Many years and 2 hip placements later, René found himself competing in a half marathon in 2020. It was something I followed on Instagram in awe of how someone with a condition like AS could pull off such a feat. I wanted to hear more about it.

After many years of being told by doctors that he shouldn't run, René had it programmed in his mind that he couldn't run. That was until one day he decided to test this.

The COVID pandemic led to him losing his job and he found himself stuck at home, bored. With the gyms closed, he grew tired of home workouts and began searching for an alternative.

He thought to himself: "Why not try running? It has been 20 years, maybe you can do it now." After that brief conversation with himself, he put his shoes on and went on a 1.5 mile run. Not content with this amazing achievement and a few hours later embarked on another 3-mile run.

He continued with daily runs for the next two weeks, working up to six miles per day. He then set himself the goal to complete a half marathon. Astonishingly, he was able to complete his half marathon in just 2 hours and 23 minutes without any breaks.

Running advice

On hearing this I became aware of just how unfit I am in comparison and asked if he had any running tips for anyone with AS.

He told me very frankly that his advice would be "Don't run." It was a very painful experience for him but he persevered to get a win over AS for the first time in 30 years and show anyone that has AS that they can still achieve whatever they want. He wanted a victory for the community, rather than for himself.

He went on to tell me that the cross trainer is an amazing way of keeping active for people with AS. I was too busy being in awe of him to take any of this in properly.

To be continued...

Sorry to tease you by ending abruptly, but one article on René's story would not do justice to what an incredible man he truly is. But have no fear I will be back again in Part 2 where I'll cover how he keeps such a positive mental outlook and his decision to ease off his biological medication.