Are You Your Own Best Advocate?
I have been a patient advocate for 15 years now. There have been plenty of times that people ask me how did I start being an advocate? Our steps are all different and we have different experiences.
One of the first things I had to learn to do was to tell my story. I no longer wanted to feel like the victim. I started practicing on my husband to ask him how did I sound and did my story make sense? I would tell my story to friends and family. No one knew my story, so there was no right or wrong answer for them. I knew in my heart that I could help someone with this.
Finding a good doctor
My biggest fear was how do I advocate for myself. I was one scared rabbit. I knew I had to take care of me. The first thing I did was find doctors who understood me and what I was going through. I had to find someone that didn’t think it was ok to give me a tube of cream for a month when I was covered with psoriasis on over 80% of my body. It took time, but I did find those doctors who communicated with me and helped me appeal insurance denials. I began to understand my rights as a patient.
Learning about my health conditions
In the beginning, I knew I had to learn all I could about psoriasis and psoriatic arthritis. It’s hard to talk about something that you have no knowledge of. You need to know who gets it, is there a cure, what treatments are out there, and what research is being done to find a cure. Stay up to date because there is new information coming out every day. People are going to ask you questions. Be ready to educate others and have answers. Make sure you know your facts because people will fact check you.
If you like writing, dancing, singing or blogging. You can turn that into advocacy work and bring awareness to your disease. You can share so much on social media, your community and get people engaged in what you are doing. People love telling their story and I love listening to them. My network has grown to where I have to say no to many things these days. Try not to get overwhelmed. Doing advocacy work can take a lot out of you. Keep in mind that you are fighting a disease also; this is why you do this.
Finding ways to get involved in advocacy work
There are so many opportunities to advocate. Contact nonprofit organizations, they have been a great help to me and always want to share my story with others. This is a wonderful way to raise awareness. I am big on just being everywhere I am asked to go. Every seminar or conference- I try to attend. You get to share with others what you are going through, but also to network with other people and talk about healthcare.
Take the first step
I know it’s scary to get out there, but you can start a support group or even start a blog. Remember we are not doctors, so don’t give medical advice. I know that when I speak to people that I can’t speak for everyone; we are all different. I always say that I speak for others that can’t speak for themselves.
Just take baby steps and be your own best advocate.
How often do you experience brain fog?