So you just found out that you’re a rare disease girl, and by the way, you’re a rare mom too! So welcome to the smallest and hardest sorority to ever join– and I’m sorry that you’re with us. That’s probably the first thing that I would want you to know.

You got some scary days behind you and you probably got some scary days ahead of you. And that’s not fair, so I think that the first thing that I can say to any rare mom is, “I’m sorry. I’m sorry that this is where you find yourself and where we have to meet. I’m sorry that you have to learn how to navigate your life in a way that you never thought possible, that you are learning that your body has betrayed you in such a profound and deep way, that you just don’t know what to do”, and so I think that that’s really painful.

I think that when you find out that you’re a rare mom you have to immediately realize that in addition to being a superhero, you’re also gonna be a warrior, and those two things become all of who you are. You realize that you’re a superhero because you do things that you can’t believe that you get done. You’re a warrior because you never quit and when you put those things together it makes you rare, exquisite and beautiful and that’s why you’re going to be okay.

I think that it’s important as you begin this process, that you learn that you’re rare and how to build your medical team. The most important thing that you’re going to do is figure out who is gonna be in your life to help move you forward towards wellness.

In the beginning you need two people: you need a doctor that you love and trust and you need a mental health professional. For a lot of women it’s hard to make that step to say, “I need a mental health professional in my life”, because, in the United States especially, we are not so good about doing mental health. We are not okay with saying, “I’m struggling.” We’re not okay with saying, “It’s hard.” We’re not okay with saying “I’m not perfect,” and because of this, if you say that you have a mental health provider it already means that you’re weak. I think that that’s just such foolishness because that is where you are really wearing your cape and you are a warrior all at the same time because you’re making the steps that it takes to make you feel better.

Are you a rare mom? Share your story with us in the comments below or on Twitter #RareMom @PatientWorthy.