Astro Medical Advocates

Let me be very clear when I say, the reason I became a patient advocate is because I’m angry. Our medical system has failed me, and so many others, in insurmountable ways. But somewhere along the way, I learned that channeling my anger into advocacy led me to hope. And HOPE means there’s work to be done.

I have been dismissed, lied to, harassed, and criticized by more medical professionals than I can even count. I have laid awake many nights, wondering if those doctors were right. Maybe I was just mentally ill. Spoiler alert…none of those doctors were ever correct. I’ve been denied treatment because I’m overweight and I have been laughed at because providers couldn’t comprehend what I was saying – because they wouldn’t take the time to listen. After over 20 surgeries, I was ready to give up on modern medicine all together. I was so tired of doctors trying gatekeep medical knowledge. I’ve spent 100’s of hours researching my conditions and I’ve spent over 30 years existing in this body. I know my truth better than anyone else ever will.

But then I decided to give medicine one more try and I met the most amazing primary care doctor. She listened. She heard me. She trusted my judgement of my own existence. She taught me that I’m allowed to take control of my healthcare and that it’s my body, my rules. During one specifically overwhelming appointment, she told me, “you need to let yourself off the hook.” She reminded me that I don’t have to be perfect, I just have to be present. She helped me regain some amount of trust in medical providers. And she raised the bar for what I should expect from medical providers. It’s been almost three years now since I first started seeing her and she has since moved on, but she left me with the skills and confidence I needed to continue on my healthcare journey. She still helps me out from time to time; she still checks in on me to ensure my medical needs are being met – and my own mother wouldn’t even do that.

After a decade of learning to navigate the American healthcare system, I proposed the idea of starting an advocacy organization. Because I had been emboldened to trust that my set of skills, knowledge, and education are valuable to other people on this same journey; that I could help other disabled persons not have to suffer through the healthcare system in the same ways I did. But then I was presented with the predicament of how to expect disabled individuals to pay for a private advocate, when most disabled folks are struggling financially, just to feed themselves. Everyone told me I needed to protect my time and energy; that doing this work pro-bono would exhaust my resources and burn myself out. But here’s the thing…I don’t care about the money.

Is my own family struggling financially because of my disabilities? Yes. But that’s why I can’t, in good conscience, charge disabled folks for trying to get their medical needs met. I know what it’s like to need help but having no money to pay for it. But money means nothing to me. Money was created *by people* to put a value on the human existence. Money can be used to buy people…so money just feels irrelevant to me. I decided that Astro Medical Advocates would be a non-profit (501c3). Because there’s still hope. And hope means there’s work to be done.

Running this organization as a non-profit will be more challenging in some ways, but it will also allow me to help people who may not be able to afford the help, otherwise. I will accept donations for services rendered, but those donations will go directly back into the organization. I will do fundraisers and create t-shirts. Whatever it takes to help as many people as I can.

Going to the doctor shouldn’t be traumatic. Going to the doctor shouldn’t be scary. A doctor is supposed to first, do no harm. A doctor should provide comfort and support. And that’s why I do what I do. Because no one deserves to leave any doctor’s office more scared than when they entered. So many doctors function with unchecked authority. And that’s where I come in, to put them in check and ensure, at the very least, that they first do no harm. Because that’s a really expensive degree they got, to not have at least learned the basics.