Advocates Sharing With Advocates: René Interviews James
One thing that became extremely clear to me since I have joined the community is the difference in how everybody experiences AS. No journey is the same and everybody has had different ways of finding relief. That is also why I cherish this community so much. By sharing our experiences we’re able to help others and make their journey a bit easier. What might be normal to one might be new information to another.
That is why I wanted to interview fellow AnkylosingSpondylitis.net author & moderator James Hollens. We have had contact for a year now but never really looked into each other's journeys.
AS and travel
James had lived in China for 2.5 years working as an English teacher. And since travel has never been that easy for me, I wanted to know how he experienced that period. James talked about already having rheumatoid arthritis when he moved to China in September 2016. But it was during his stay there that he started to experience more pain.
James wasn’t able to move due to the pain. The doctors in China first were treating him for muscle pain he was only receiving painkillers. After one week of being in the hospital with legs swollen, it became clear that the doctors couldn’t help him anymore and James had to travel back to Great Britain.
Receiving the diagnosis
When in China, the doctors told James that he might have AS but they didn’t give James any more information. A long and insecure period of searching information on google followed for James. What kind of disease did he have and what could it mean for his future? Back in Great Britain, it took 3 months for him to receive the diagnosis of AS. Feeling relieved that he finally had an answer. Finally, he knew what was happening to him and knew he now could receive the right treatment.
A disease like AS is life-changing for everyone. James experienced it just like that. For 8 months he had to make use of crutches. Thinking that this will be his life from now on. Fortunately, James was able to receive biologics. And within one month he started to experience another life-changing event.
Within 3 months after starting biologics he was able to walk again without having the need to use crutches. James describes him as feeling like Forest Gump at that moment. Run Forest run, while the braces fell off Forest's legs. That called for a celebration and that is exactly what James did. He celebrated this moment at the Notting Hill Carnival with friends and drinks.
Dealing with the mental struggle
We’ve all experienced the toll a disease like AS can have on your mental health. It was the same for James. From a happy life to not being able to chase his dreams anymore was very frustrating to him. And it took him some time as well to get his life on a more positive track again. How he handled that part of his journey will follow in our next article.
Do you notice worsening flares in colder weather?