Ask the Advocates: How Can Someone Become an Advocate?
Our amazing group of macular degeneration advocates answered a few questions to share their experiences and tips with the community. In our last "Ask the Advocates" article, we asked our advocates what motivated them to become an advocate for patients with macular degeneration and how they got to MacularDegeneration.net. In this "Ask the Advocates" article, we asked our advocates what tips they have for someone who is looking to become an advocate for patients with macular degeneration.
First, write about what you know if you are thinking about being an advocate. One of the topics I've recommend to the people I've referred to Health Union (Andrea, Cora Lyn, and now Jennifer), is to write about "When I got the diagnosis, I ..." If you pay attention to what's going on in your head from day-to-day, there are many other ideas such as "When I went to the eye specialist today..." and "Why is it so hard to do ..."
Other topics can be what you wished you had known about macular degeneration but weren't told, what low vision aids help, how the people in your circle react to your MD.
My interest in understanding macular degeneration
I'm in a little different position since I don't have AMD...yet. My dad had geographic atrophy at a time I knew very little about it, and I was 700 miles away. I'm here because of Sue, who so generously shares her life with us. She also loves to write and does an awesome job! She also has a unique perspective because she's a psychologist.
Advocating as a supportive friend/family member
Whether you're a caregiver type like me or someone with macular degeneration, you have the opportunity to pay back to those who have helped you by 'passing it forward.' You know what else? It can help you work out some of the issues you didn't even know you had. Funny how that works. ::smile:
Working with a great team
I also can't say enough about the help Courtney and Shelby, the MacularDegeneration.net site leads give. They are EXTREMELY good at what they do and are really, really patient as I found out when I came back to writing articles after I'd been so ill. Those pages were, well, let's just say they weren't my best. Courtney was great and helped me find my way back.
Tips from Andrea
Tips for becoming an advocate:
- Become a part of a community where you feel comfortable to share your knowledge - find a platform for sharing your thoughts
- Be empathetic so you can comfort others in their time of fear and need, understand that we are all on similar, but very different health journeys
- Be brave enough to put your experience out there...the good, the bad, and the ugly. It helps others realize that they truly aren't alone and that what they're going through isn't strange or weird
- Write about your experience, get it out there to reach others. This can be done in online communities and support groups by contacting the admin of the group
- Comment on community posts when you have good information to share. Share information and comfort others who are scared. Know that there is a big difference between the two needs
If someone disagrees with you or criticizes what you say, don't let it hurt your feelings. Again, we are all in different stages of healing and sometimes fear and sadness comes out as anger and frustration. Advocating requires a strong passion to help others as well as to seek helpful information.
I would suggest to anyone considering becoming an advocate to just start. That was the most most difficult thing for me. Still is. Open up that app or get out your pen, and put down some thoughts. In any order, you can organize them later. The readability section in Wordpress is a helpful tool I didn’t know existed.
Tips from Sue
The small step I would suggest is this: be visible. Be out there as a visually impaired person. Normalize vision loss in the larger community. The visually impaired are in our communities and need to become parts of our communities. There is no shame in being visually impaired. Show that to those who are ashamed or afraid because of a vision loss. Come out of the closet and be an example of how it is done.
I want to become an advocate! Where do I start?
If you're looking to become an advocate, it takes 2 easy steps to get in touch with us!
- Share your experience with macular degeneration by submitting your story here
- Email us at email@example.com and tell us your username, your story title, and that you're interested in becoming an advocate
You'll hear back from our site leads, Courtney and/or Shelby, and the process will go from there. We look forward to hearing from you!
Are you aware of assistive technology for AMD?