It’s Time to Break Down Walls and Celebrate the Life We Have
Revealing our scars can bring us closer together as caring individuals
“This isn’t the life that I planned, but it’s the life that I got,” an athlete friend of mine recently said as he sipped his latte. Now in his 70s, my friend was reflecting on a life he had worked hard for, but which wasn’t quite what he had imagined. The last several years had brought tragedy, and he found himself pondering what all his hard work had really gotten him. He wasn’t expecting the ending to look like this.
Sometimes a quote or a conversation can cut you to the bone and have an impact on how you look at life. One simple statement can make a complete stranger a close friend, and that’s incredibly beautiful. Wisdom is something that can only be gained through experience. At that moment, my acquaintance stopped being an athlete whom I enjoyed hanging out with, and he became my friend. I saw my friend being raw and honest, and I couldn’t help but relate to him on a very human level.
To me, that statement hit at the core of the work I’ve done with vasculitis patients in the last seven years. Life is tough, and we must learn to celebrate the small victories of our new normal. Otherwise you’ll find yourself angry and bitter that life doesn’t look like what you had planned. The quicker we can learn that, the healthier we will be.
That’s why I’m excited the Victory Over Vasculitis campaign, which started as an awareness campaign, is now a total wellness program to give patients the tools they need to live this kind of life.
Getting the help we need
When you are diagnosed with a rare disease, it’s hard to imagine a future that is OK. After receiving a vasculitis diagnosis, you won’t find people running to social media to pronounce, “This is the moment I’ve dreamed about since I was a kid!” Instead, you’re left to ponder, why did this happen to me?
We spend our formative years learning to dream big or shoot for the stars. I think that’s why being diagnosed under the age of 30 is particularly tough. For most people, at that age, life hasn’t beat you down yet. You still believe you will be one of the ones who makes it.
You know it’s going to be tough dealing with all of the health complications, but the battlefield of the mind is likely to be where the real war is waged. Most of us don’t learn that from our doctor, which is a tragedy. It’s often only after we’ve suffered in silence and reached our breaking point that we find the help that we need.
It’s why I have a saying: “Real recognizes real.” Those of us who’ve had to experience pain and tragedy can recognize the pain and struggle in other people’s eyes.
Weirdly enough, I find myself often pushing and poking at people to find their flaws or let their demons out. It might sound weird, but I truly enjoy watching walls break down between people when they get to open up and be their authentic self. To do that, you have to talk about your scars. I think that if more of us shared openly, we’d recognize that so many of us humans have things in common that we can celebrate.
Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.