Dear friends,
I posted the following note on my personal Facebook page this morning after seeing a note in my FB memories pop up about how far I’ve come. How far I’ve come, indeed, and yet I also realized how far I’ve yet to go. Healing is a process, and while we can continue to heal from the physical symptoms, the experiences we have with this disease creates a foundation for trauma for which it takes strength and courage to continue to unwrap.
And if there’s one thing Lyme patients have in spades, it’s strength and courage.
I’m at the point in my journey where I’m still healing from the emotional effects of this disease. That’s why LymeBrave Foundation was created and why we stand firm in our mission... because we understand firsthand the toll that this experience—the misdiagnoses, the invalidation, the lack of emotional, financial, and physical support—can entail. It’s why we’re working hard to bring you programs that focus specifically on you in support of your journey.
I’ll be honest. It hasn’t been easy to heal from this experience, and there are many days when I still feel the resentment and bitterness of having had to endure the needless suffering I’ve been through—what hundreds of thousands of patients are struggling with even now. Even writing those words make me angry—to know that there is still suffering among this community. That’s what we’re fighting for.
We’re fighting for you.
This following post might trigger some of you, but I felt called to vulnerability, to sharing it here. Even just a year ago, I wasn’t ready to acknowledge these thoughts. Even today, in having this conversation with friends, I felt angry and defensive and not ready for the renewal of pain that came with it. “Forgive my doctors?” I thought. “Forgive the assholes who denied my pain, ignored my symptoms, patted me on the shoulder and said I was fine when I was dying from a disease anyone can get?”
Oops. See? Still some resentment. But I’m starting to understand that acknowledging these emotions is also a part of the healing process. And shifting perspective and finding forgiveness is for me—for us—and not for them.
I want this community to be a safe space full of hope and motivation and healing, which is why if you are not feeling emotionally strong at the moment, please stop reading now. You have our support, you have our love. We know how strong and brave you really are beneath those feelings and the weight of this experience, and we are here for you.
But I’ve decided to share my words in the hopes that it might spark some healing within this community as well. Because we have seen all along that this is where it starts.
It starts not with the medical community, but with us.
Stay strong. And always be brave.
With all my love,
Susan LymeBrave Foundation Founder and President
***
“I’m healing this morning from some residual trauma from this illness—an illness I’ve fought so hard to overcome and I’m still so proud of myself for how far I’ve come.
Seven years ago this May, I sat in the waiting room of the doctor who would save my life after every other doctor either invalidated or ignored my pain—or both. I had doctors telling me my very physical symptoms were all in my head, patting me on the shoulder and referring me elsewhere because they refused to see beyond what was visible to them. These doctors chose to look at other patients rather than see my suffering right in front of them, and rather than suggesting more tests or doing their own research or referring me to a specialist, they said they couldn’t help me. They turned me away so that I had to keep fighting and finding my own way to save my own life.
“What did you truly need?” my friend asked me.
I needed them to show up for me. To want to fight with me because I can’t do it alone—no one can. I needed them to sit down with me and look me in the eye and say, “I hear you. I see you. I’m here.”
That’s what my doctor did that May morning when I was dying and ready to give up hope, when every other doctor looked at my charts with all the right numbers, so nothing could possibly be wrong. They ignored the fact that I couldn’t walk. They ignored the fact that I could barely talk. They didn’t see the pain I was in when I was sitting right in front of them... or maybe they did and they just didn’t know what to do.
This is the point where I learn to forgive those doctors—to really set aside my own pain and feelings of betrayal and fully forgive them. I felt like they didn’t care, but maybe that wasn’t the case at all. Maybe doctors care too much but are bound by their own pain and feelings of helplessness. Maybe they are constricted by their own ignorance. Because maybe they didn’t know.
They need to do better—for the sake of all patients, they need to do better—but maybe they truly didn’t know.
Every single person in this world wants to be seen and heard and understood. Every single person in this world—at some point or another—needs to feel like someone is there for them. I will always be grateful for my family who fought with me and my friends who supported me and the doctor who, on that sunny day in May, sat in the chair across from me and told me he understood. Because he had been there. Because he knew what it was like. Because he had been there himself... and that was why he was fighting for patients like me.
That’s why I’m here, too. Not just for patients but for anyone who feels like they’re not seen or heard or understood. Because I know what it’s like to be strong but still be in pain. I know what it’s like to fight but to still want to be fought for. I know what it’s like to save your own life but to still want someone at your side.
I will always, always show up and say I hear you. I see you. I’m here.
So to those doctors, I’m releasing that resentment and learning how to forgive you. Because I don’t want to carry the weight of that bitterness in my heart and maybe we each learned something along the way. Those doctors will never see this—they’ll never remember who I am among the sea of faces they see every day, and that’s OK. Because I understand now the burdens they can face in wanting to help and not knowing how. And so to them, too, I say:
I hear you. I see you. And I am here.”