On advocacy and intuition
This past week I made a decision about my health. Just before thanksgiving, i had labs done, and my tac level (level of immunosuppression) came back lower than they would have liked. An interim coordinator called me, and asked me to go up on my dosage. Let it be known I have absolutely no issue adjusting medication, if it is necessary. But specifically regarding this situation, I had some concerns, and felt like maybe adjusting my tac dosage would be putting a bandaid on the bullet hole of a bigger issue. My regular coordinator and I have a great relationship where we frequently go back and forth exchanging ideas, asking questions. He trusts my authority in my body, and I trust his medical expertise as he reviews my test results, and it’s always been this open exchange of dialogue. This time, when I asked questions, instead of finding someone who knew i just wanted to understand and answering my questions, I was called difficult.
I’ve been existing in the medical space for years, working in patient advocacy full time for the past year and a half, and I know what is within my rights as a patient. I also know my body, and for the most part I’ve worked really hard to make sure all the people on my team are aware of my authority and involvement in what goes on, and respect that. This coordinator didn’t, it is what it is, she and I have no relationship, and I did what is well within my rights as a patient to do, which was postpone the medication change and get repeat labs done the next week.
I called, left a message for my regular coordinator to call me when he returned to the office, got repeat labs and we waited. It turns out my intuition was right (surprise surprise. that bitch is strong!) and when my regular coordinator called me back, he was able to answer my questions, confirm medically what I knew intuitively, and we collaborated on a care plan.
Every time I go into these situations, when I push back or test my own authority and intuition, I’m insanely nervous. Every time I’ve been right, but I’m also very aware this kind of pushback isn’t the norm, that a lot of my friends who have also had transplants don’t have this kind of relationship with their medical team, and someone with power who doesn’t know me could easily misinterpret my questioning for defiance and label me non-compliant, affecting any further medical care I recieve. That’s the game of transplant, and it doesn’t make sense unless you’ve lived it. It reveals how incredibly broken the medical system is, and how extremely privileged I am.
I was talking to multiple different people about this during the week between repeat labs, and I mentioned to a friend that has the privilege of existing mainly outside the medical system that that doesn’t feel like a choice to me. Not only could I not survive without the system, I’m very aware all the time of how many people are in the system, mistreated, with no idea how to advocate for themselves or recieving major pushback when they do, and not actively working to change the system doesn’t feel like an option to me. That discussion reminds me of one I have frequently with my husband - who has chosen to stay inside the church and try to change it while I have left almost entirely. I don’t think either one of us is wrong. We do what we can, when we can, and when we can’t, we can’t.
I spoke to another friend who is waiting to get a diagnosis, and she expressed how hard it is to keep fighting for yourself when nobody else is fighting for you. We have to be our own advocates, and at the same time it is exhausting and soul sucking. And I understand why people give up. I understand why so many people die in the system, whether by choice or not.
And I have no answers. Sometimes all I can do is take care of myself, and hope the work I’m doing for me will overflow. Some days I try to save the world and some days the only person I can save is myself.
I was asked recently for my thoughts on patient advocacy. At the time advocating for myself felt exhausting, I wasn’t feeling believed and I wanted to make some sassy comment about how hard and lonely and depressing it is. Which is true. And learning to advocate for myself within a broken system has taught me to trust my intuition more than ever before. I can feel the power running through me of being so intensely in tune with my own being. I had a moment this morning about something entirely unrelated, and I had this moment of panic not knowing what to do, wanting someone else to make the call, and then it hit me. like duh, I know what to do. And I got quiet, I consulted my intuition and I made the call.
Doctors have years of medical training. 100% they are necessary and wise, and there is no way I would let anyone without all that extensive training cut into my body for surgery. And I’ve been living in this body for 26 years. I’m an expert on me. These two aspects coming together is how we create health care, human care.
There’s a lot going on right now that my intuition is being loud about. And I trust her. I trust me. I trust that when the timing is right I’ll know, and I’ll know how to make the call, and I’ll know how to go deep and when it’s time to come back up for air I’ll know how to do that to. Existing in the medical world has just given me practice in trusting myself.
No one cares as much about you as you care about you. No one else knows what its like to live in your body. Knowing when to look inward, and when to ask for help, is a skill that gets stronger the more you do it.
