Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating for your condition(s).
Honestly, I fell into it.
That phrase explains a lot about my life, too, but it's true!
As a younger person, I did a TON of advocacy work around women's right, feminism, sexual health, education, and human rights. It took a long time for me to transition to using those powers for my own health stuff.
I started writing for me and to show T what kinds of things we were dealing with potentially as we began dating. I needed to learn more about my body and have an outlet that was all my own, too. It was because of how rare Still's Disease is that I encountered other patients. They found me for the most part.
Going into advocacy was really a by-product of raising awareness of what I was dealing with and how dangerous chronic illnesses are or can be. I met people who had no idea that diseases like lupus can be fatal or that pain can cause changes in our brains. I also met people who were incredibly into alternative stuff to the point that they were harming themselves without taking on any treatments.
I began to try to educate more so that we weren't being taken by snake oil salespeople.
Most of the advocacy work I did in the beginning was online. Most of my stuff is still online, but now I'm able to travel and do so much more in-person work, too. It's amazing to meet others in person and to talk to them, whether I've just met them or have known them for years.
Do you do advocacy work? How did you get into it?