Making a Difference After Someone's New Diagnosis

This summer, my dad introduced me to an acquaintance he made while playing "pétanque," the famous French boules game. He asked me if I could help that man who recently got diagnosed with an inflammatory rheumatic disease. He was not diagnosed with AxSpa, but with a condition that shows similarities in terms of symptoms and burden to live with.

The thing is, I did not know this person at all

My dad told me he used to be a professional football player, at quite a good level. When I said to my partner that I was meeting that person, he was jealous because he was a renowned player! I won’t share his identity of course, but the context and the lifestyle of the person I was about to meet made me think.

You see, this person has been fit and healthy all his life, looked after his physical health and trained at high level of performance. When I met him, I saw a vulnerable man, lost after receiving his diagnosis. All was new and scary for him, and he needed to talk about what was happening to him.

Sharing my story with him

Although we don’t have the same conditions, my dad thought it would be useful for him and me to meet and chat. And it was! We sat on a bench next to the "pétanque" playground and we talked. I listened a lot to start with, to understand his situation. I could sense his loss of confidence and control over his health, his body, and that was a real challenge for him.

He wanted to know my story and how I live with my condition. I shared bits of my journey of ten years of seeking information, getting effective appointments with doctors, finding an appropriate treatment, and learning ways to adapt my lifestyle to my needs.

I was cautious not to over share to him, as it can be overwhelming for newly diagnosed people to receive a lot of information and hear personal experiences whilst they are still figuring out how to accept their diagnosis, their new life situation and what to do first about it.

I think I gave him a helpful perspective

We talked about the doctors he saw, his treatment, his ways to manage his symptoms, and I think he realized that he was doing already a lot. There were few pending questions to discuss regarding medication and finding adapted physical exercise. But overall, the discussion we had showed how resilient he was at his age, over 70 years old, and how much he had already done to adapt to his new life circumstances. He thanked me at the end for the time we spent together.

I found this encounter deeply beneficial

First, I was able to help by listening and sharing a bit of my story. Also, this was a reminder of how things can be hard in the early days after a diagnosis. Yet, with good support around us, people we can talk to, together with access to specialist doctors and adapted treatment, education about the condition and strategies to cope with symptoms, there is hope to live better with such chronic diseases.

I felt grateful to be present for that man at the time he needed support. We have exchanged phone numbers in case he needs help in the future, however I trust he will do fine without me. When my experience of living with AxSpa gives me such opportunities to support others, that makes me simply happy.