By Stacey Philpot
It’s been said that the greatest things in life aren’t things at all. They are moments, people, experiences, hopes, dreams, feelings and the like. As someone with a rare disease, I couldn’t agree more. We all need a tribe, people to do life with, to share the ups and downs, the joys and the sorrows with. If you have a rare disease or chronic illness, you may find this need intensified. You may also find yourself surrounded by a very special and unexpected tribe: the rare tribe.
In the early days of my CVID diagnosis, nervous and unsure about my upcoming IVIG infusion that would be happening for the first time, it was my online rare tribe in the form of a CVID group that rallied around me.
They told me about how to hydrate to prevent post infusion headaches and which pre-meds to ask the doctor about. They even requested that I check in once my infusion started, to let them know how I was doing. Now, pay no attention to the fact I’ve never met a single individual from this group in “real life” because it doesn’t matter. The “zebra herd” takes care of their own, whether it’s a question about an infection at three am or a rant about a side effect from a medication, you can bet this part of my rare tribe will hear me out.
The first time I sat in the waiting room of my specialist office, thumbing through magazines written for folks far smarter than myself and scanning the numerous accomplishments of said specialist on the walls, I could have never known that this place would come to feel like home. Eventually, the staff looked forward to my visits because I always brought healthy treats like donuts or pies. I anxiously longed for the moment I’d step into that sacred space where I was understood. No matter how perplexing the litany of symptoms I listed off was, my specialist would smile and nod, ever so placidly, as if I’d just told him I’d had the most amazing roast beef sandwich for lunch. Nothing seemed insurmountable or preposterous to him. If like me, you’ve walked these halls of rare disease and chronic illness, you know there are few things that move your soul quite like feeling understood and well cared for. During each appointment, my specialist’ eyes would light up as he shared with me about his latest research endeavors. And while I’d never anticipated that these doctors, nurses, and office staff would become a part of my rare tribe, they most certainly did, and my life is the better for it.
My specialist passed away last year and for now, I do my monthly infusions at a local cancer center. It’s different from doing them in the hospital in many ways, one of which is that we all receive our various infusions in one large, common room. Because of this, I get to meet lots of different people along the various stops in their journey. Some are battling cancer, autoimmune disorders while others are there for supplements like iron. What I love about it is the fact that in the room, everyone becomes a family, a tribe. Everyone shares their story and supports one another. Everyone cheers one another on. Every time I go, my tribe grows exponentially. My eyes are opened to new perspectives and struggles. I always walk away moved by the tenacity of the human spirit.
My tribe is pretty awesome. I bet yours is, too. I bet, like me, you find yourself overcome with gratitude for the encouragement and support they provide. I bet you’ve learned from them and been amazed by how accessible they are.
But if today, your illness is new to you and you’re on the hunt for a tribe, I’d like to encourage you to keep your eyes and computer open. The members of your tribe may be all around you, in front of you in the line at the grocery store, next to you at the doctor’s office, just a quick Google search away. And if they’ve been harder to find than expected, don’t give up!
Your rare tribe is worth the wait.
Stacey is an author, goofball and avid reader. You can find her blog at chronicallywhole.com where she endeavors to encourage other warriors like herself along in their journey of battling for health and discovering wholeness. She is mom to Hayden and Avery, stepmom to Julie and wife to Ryan (a smarty pants who works at NASA and logs their whole life on spreadsheets and pie charts, true story!) She has a strange affinity for eating whole meals in bed (don’t tell anyone) and is convinced smelling old books will make her smarter.