Finding Grace in a Primary Immunodeficiency Diagnosis

Since I’ve written about some of what’s hard about having PI,

It’s been really important to my well-being to be a part of a community. Because of the rarity of PI, my community has been forged online. I know I wouldn’t be an engaged and active patient without those connections. I think those relationships are what make me most grateful for my CVID journey. I’ve gained so much empathy and learned so much from people who have taught me how to dream new dreams. I have become a more confident, self-aware, and emotionally honest person thanks to my PI friends.

In an odd way, I’m thankful for the medical journey, too. Because of my own struggles, I’ve been able to be there for friends who were going through their own difficulties and make recommendations. I joke that I’m like an armchair physician. I’m able to be there and talk through decisions, help people understand various medicalese and make them feel more like they’re prepared and confident in their medical care. That fills me with joy, since I know that’s a really difficult thing for a lot of people. Conveniently, I also know which cold medicine works.

Professionally, I’ve been able to apply my knowledge of life as a complex patient to my work. Issues of care coordination come naturally to me, and those same issues are really important to hospitals implementing value based care programs. I am comfortable talking to people who have MDs and am able to speak from a patient perspective, because I know what it’s like to be complex. I know what it’s like to be a challenging case, and I know how hard that is on patients and their caregivers. That experience has been invaluable.

I have also been able to help those in my community understand and navigate insurance issues. I know how scary and daunting insurance is, especially when you’re facing denials or requests for proof of medical necessity. That stuff can make you feel crazy because, on one hand, you have the doctor saying you need something and, on the other, you have the insurance saying you don’t. When it’s not the most fun treatment in the world, it’s easy to throw up your hands instead of digging in. I’m glad I’m able to help people dig in and get what they need.

One of the reasons I jumped when Colin suggested we start this project was so that I could make that knowledge easier to disseminate. There’s so much need for patients to be their own advocates and, when you’re in the situation, it’s difficult to know where to start. I’m hopeful that, through the conversations on this blog, our audience is able to learn something and apply it to improve their outcomes. If there’s ever anything we can do on that count, please do reach out and contact us. If nothing else, we’re here to provide an ear and will point you to resources when we can. Thank you for joining me on this journey. In the end, it’s about you.