Join Tegan discussing the One Thing she wants people challenged by pain to know about. Explore the current state of pain science research and clinical practice in this straight-to-the-point interview with Tegan.
About Tegan
Tegan is a teen who recovered from Complex Regional Pain Syndrome (CRPS) and wants to share her ‘One Thing’ with you!
Transcript
What’s the one thing you want people challenged by pain to know?
There are so many things I would want people to know. And I guess it’s different for people who are actually going through it to people who are working in that field.
Even if it’s kind of embarrassing or difficult to explain, just try and tell people around you what’s going on. Because there’s so much misunderstanding and ignorance when it comes to chronic pain or persistent pain in general. Even like being in high school, and I was lucky enough to only be in a wheelchair for a couple of months. So I get to experience what it’s like to be living in a wheelchair.
I remember one day, I was like in class, and I stood up out of my wheelchair to grab something. And everyone was like, “Oh, my gosh, she’s faking it because she can stand up”. And I was like “I’m not paralysed”. So, I think people don’t really have an understanding of, I guess, like a hidden disability, even though it sounds like a pretty intense term, for what it was. Yeah, I think just asking, even if people asked about it, I would definitely helpfully explain to them instead of people saying things behind my back, because that’s much worse.
Yeah, great. Is there anything that you want people to know about that dynamic as a patient, but then you have your parent there as well.
Listening specifically to the patient, not just what the parent’s perspective of it is. Because although my mum got to experience everything, like first, well not first-hand but second head, like watching everything that I went through, she still doesn’t understand what it actually felt like, or the sensations or the emotion behind it. She just has her own perspective of the story. So I think that even if it’s like, a young patient, and they’re not as, they’re a bit more immature with their language, and they can’t really express themselves, just listening to their side of it, and then trying to piece that together.
Is there anything in particular that you learned that really stood out for you, like that was maybe, like was there a turning point for you?
There were so many. I mean, like, I learnt so much about pain science. I’d say that the most important thing was understanding that your experience is different from everyone else’s. So even if it’s weird, like and you have specific rituals and routines that help you like, that’s okay. And you should kind of embrace that, instead of trying to find everyone else’s cures and using that because there’s nothing like no two stories are the same. Especially when it comes to like a nervous system issue.
Thanks so much for your time Tegan, it’s awesome, well done.
Thank you.