Ask the Advocates: How Did You Become an Advocate?
Our amazing group of macular degeneration advocates answered a few questions to share their experiences and tips with the community. In this "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.
I'd been working with Sue since February 2016. She taught me so much! I learned a lot from doing research for our website. I started a Facebook group in May 2016, and I've been learning more and more. I think I learn something new every day! Not only am I learning facts, but I'm also learning what emotional needs are out there that are not being addressed.
Reaching more people
It has been great to be able to help people with macular degeneration that way, but I knew that there were a lot more folks with the disease, or are helping someone with it, that hadn't seen the website or the group. When Courtney and Shelby, the MacularDegeneration.net site leads, came to Sue and me, I jumped at the chance to share what I've learned with a wider group.
I believe I became an advocate through a recommendation from another online support group I'm in (somehow this amazing opportunity seemed to fall in my lap - and I'm so glad that it did!). In this other online community, I would see how much pain fellow MD patients were in...feeling scared, confused, and just not knowing what to do or where to start.
The teacher in me loves to share knowledge, and with my diagnosis not being 'new,' I had a lot of it. I take a very 'whole-body' health approach to battling this disease and try to share my passion for food and healthy living with anyone willing to listen. My favorite MacD friends are the ones who want 'change' but don't know where to start. Healthy eyes (mind, and body) are always the goal and living joyfully in the meantime is just as important.
Trying to help
I feel that what people were seeking in this online group, which I'm still a part of and very much love, was encouragement, hope, and support so I commented on their posts and questions...just trying to help. I think my personal beliefs about health and helping others feel good and not alone are aligned with Health Union's...and that's really how this amazing opportunity came into my life. It's been a very healing experience for me.
Plus, also...the universe brings you what you need when you need it (but that's for another article someday)!
I hope this helps???? Y'all know I love it here.
I became an advocate when Linda recommended me to MacularDegeneration.net. I was looking for something to challenge myself intellectually when this opportunity presented itself.
It became that challenge for me at a time when I needed to do something to exercise my brain. It gave me a reason to research and study in more detail than I had been. It’s also a great feeling to be able to share what I’ve discovered with others on this same journey. As an optimist, when I read some of the depressing comments, I want to try and give them a bit of hope. Plus the stipend is a nice benefit!
I came in the backdoor to become an advocate. It was not my intention at all when I started writing over three years ago. My intentions were self-treatment and self-education. As a psychologist, I was well aware that journaling is a proven technique for mental and emotional healing. My writing for our website, mymacularjournal.com, was primarily a public attempt at journaling my thoughts and feelings.
Personal understanding, public self-treatment
As I have said before, I get very testy when I am treated “like a mushroom.” Feed them bull poop and keep them in the dark. I was raised on Schoolhouse Rock and their motto: "Knowledge is power." Once I was diagnosed I was on a quest for understanding exactly what I was dealing with. No one in the medical profession was giving me information so I went out and dug it out myself. While I was doing my very public self-treatment, it only made sense to start sharing knowledge as well. Helping myself led to helping others.
Looking to become an advocate?
This is a journey that many advocates follow, taking their conditions and their understanding of them into their own hands. We are so grateful to have this particular group of advocates on MacularDegeneration.net and build this community of shared understanding, support, and knowledge together.
Interested in becoming an advocate for macular degeneration? Stay tuned to find some tips on how to get started!
Do you still drive?