Advocates Sharing With Advocates: James Interviews René
If you read the first part of my conversation with advocate René Agterhof, you will have realized what a truly inspirational man he is.
He is also full of surprises, like the fact that although he was diagnosed at 15, René didn’t realize he had ankylosing spondylitis until last year. This wasn’t due to any confusion on his part, rather the fact that in mainland Europe the condition is known as Bechterew's disease.
Part two of this interview focuses on the story behind René's exceptional mental outlook and his decision to ease off his biologics.
What has always impressed me about René is his incredibly positive attitude when it comes to tackling chronic illness. I wanted to find out more about this mindset.
René firmly believes in the idea that the subconscious mind learns through repetition. Therefore, if you continue to tell yourself that you are sick or weak, then sure enough that will become your reality. René began to reprogram his way of thinking, making daily affirmations and telling himself "I am strong" and "I will be better."
“The most important words in the English language are ‘I am’- anything you put after that will be your reality,” he told me.
This really hit me. Not just because a native Dutch speaker was telling me the most important words of a language that is allegedly my mother tongue, but because it was such a powerful sentiment.
René joined Instagram with the sole purpose of showing (NOT telling) people what he was able to achieve. He hoped by doing this it would inspire other people with AS to take on this mindset and see that they can still achieve their goals as he did.
Not wanting to take the credit for coming up with this mental outlook, René was quick to credit YouTuber Eric Ho and author Napoleon Hill for inspiring him on his journey. He left me with an inspirational quote from the latter:
"Whatever the mind can conceive and believe, it can achieve."
Coming off biologics
As someone who has benefitted so much from taking biologics, I was very curious to know why René had recently made the decision to wean himself off of his.
When first prescribed his Enbrel injections René was warned that he was not being handed candy, it was heavy medicine. Although it helps the body, it adds substitute proteins that replace the natural ones with chemicals that prevent the spine being attacked by the body.
Weirdly, this was actually news to me. Probably because at the time I was given my biologics, I was so off my head on painkillers to fully understand and in such a bad place that I would have accepted anything the doctor offered me.
Now that René is in a good place with his condition, he wants to see if he can move forward without any man-made chemicals in his system.
Despite his decision to slowly come off his biologic medication, he isn't against using them. He believes that anybody that is struggling with their condition and benefitting from their use should definitely continue.
During his 13 year of taking Enbrel, he had no negative side effects and he wasn't shy to admit how much they had helped him along the way.
His decision is all a part of the concept of reprogramming himself that started with taking a new mental outlook. He now wishes to see how far he can go on his healing journey without medication.
If this experiment does not go to plan, he is not afraid to go back onto biologics. However, the current plan is to gradually reduce the frequency of injections until eventually he is just taking ibuprofen when necessary.
I would like to conclude by thanking René for opening up to me about his life and sharing some of his words of wisdom.
Learning that despite everything he has been through, René has been able to re-program his mindset and take control of his condition, has filled me with inspiration. I hope anyone reading this feels the same.
The purpose of writing about each other’s story was to show that no single person's journey with AS is ever the same. We all have different paths on this chronic journey, so don't be afraid to share your story as it just might help someone else.
How much about your AS do you share with others?