The importance of building a care team that works for you
Finding the right provider is challenging, but essential
I’ve been reflecting lately on just how important — and how hard — it is to build a care team that actually works for you. It sounds simple, but it’s not. And if you’ve ever had to start from scratch or find a new provider, you know how unsettling that can be. Those in-between moments — before you’ve built a team, or when it suddenly changes — can feel like a free fall.
As I navigate some upcoming life changes, including a move, I know I’ll need to find new doctors. That reality is prompting me to draw on the lessons I’ve learned over the past few years of living with ANCA vasculitis. I wanted to share a bit of that journey, in case it helps you reflect on your own care team and whether it’s the right one for you.
A while back, I journaled something during a particularly rough patch. I was using a Hospital Emergency Advocacy and Treatment (HEAT) Kit — a free, disease-specific tool designed to help patients track symptoms and treatments and navigate complex care. It prompted me to record not only my vasculitis symptoms, but also what I was feeling and what I needed.
Here’s what I wrote:
“Today, my symptoms are bad. Not just the usual ones — like the bursitis in my knee that makes kneeling impossible — but new ones, too. Tingling in my hands. Pain in my feet. And a fatigue that’s … different. Not the slow drag I’ve learned to live with, but crashing waves of exhaustion. The kind that makes chewing feel like work. That pulls me into sleep so deep it feels like I haven’t rested in weeks.
“What keeps me going? My wife, my best friend, my anchor. My family. My support group — people who nod in recognition when I share. They get it. They offer empathy, wisdom, and a kind of connection that only comes from shared experience. I needed them more than ever this week.
“I’m between doctors. My previous doctor, who truly understood the complexity of my disease, moved away. My case isn’t straightforward. I’ve had allergic reactions or major side effects from every standard treatment. My former doctor thought creatively. She was my lifeline. And her departure felt like the ground had shifted beneath me.
“I was surprised by how hard it hit me. But then again, I’ve been on prednisone for two years; regulating emotions is hard on a good day.”
A few weeks later, I added this:
“This week, I joined two support groups instead of one. I leaned into therapy more than I had before. And for the first time, I said it out loud in one of the groups: ‘I’m scared and angry. Maybe it’s not fair to feel angry, but I am. I’m angry to be on my own again. Angry there are so few doctors who know about this disease. Angry to need people so much.’
“But saying it brought relief. Being honest helped me understand what I needed in a doctor — what had worked before and what hadn’t. That clarity helped me keep going as I searched for a new care team. It took a few tries. I saw a couple rheumatologists before I found the right one.”
Building your safety net
For those of us living with chronic, complex illnesses like vasculitis, finding the right doctor isn’t a one-time task; it’s more like entering a long-term relationship. You wouldn’t move in with a partner without knowing you’re compatible. Ideally, the same should be true of your care team.
It’s about more than clinical knowledge. It’s about whether they listen. Whether they see you. Whether they understand what matters to you and what quality of life looks like in your world. And we, as patients, have to show up honestly. That’s hard when you’re hurting, but it’s essential.
Today, I have a great care team. They are smart. They care. They listen. They partner with me in treatment decisions. And they have a high level of emotional intelligence — something that matters deeply to me.
Now, as my wife and I prepare for our next chapter in life, and I start the process of finding a new team in our new location, I feel more prepared. More confident. The stakes don’t feel quite as high, because I now know what I need and what I have a right to ask for.
When you live with a disease like vasculitis, relationships matter. Your care team, your community, and your people are your safety net. They’re the ones who help catch you when your symptoms creep back in. And that net can include anyone: your rheumatologist, your pharmacist, your infusion nurse, your partner, your friend.
So I invite you to take a moment and think about your care team. Do they feel like your net? Are they working for you? And if not, what would it take to begin building a team that truly does?
You deserve that. We all do.
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.
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