Confessions of a Macular Degeneration Diagnosis: Helping Others
In life, there are moments that change things forever. At any time, something can happen that makes you realize that nothing will ever be the same. These moments divide time into a ‘before this’ and an ‘after this’.
Honestly, I can look back at it now and see all the progress I’ve made from that fateful day 13 years ago. Heck, nowadays I’m mostly grateful for my diagnosis. Yes, you read that correctly, I said I’m grateful for my diagnosis.
I mean… Look, am I happy that I have a degenerative eye disease? Of course not. Do I feel grateful every single moment? No way.
Hardships can be a catalyst for change
But, this really hard thing has been the catalyst for me to change my life in big ways. It’s given me the permission I needed to stop worrying all the damn time and start living my best life.
My diagnosis has even been an avenue for me to start helping and guiding others on their own health journeys through my patient advocate articles and memoirs. So, I can’t be completely mad at it.
Finding the right-fit doctor
I’ve come a long way since the day I was diagnosed. I lovingly call this day ‘D Day’.
Dr. Nonchalant left the room, but not before casually suggesting I take a shot of whisky before my next appointment to ‘help calm me down’. True story.
Even though my feelings were hurt, I learned an important lesson from my diagnosis experience: Right-fit doctors are a must! If you're uncomfortable with your doctor in any way, I highly suggest finding a new one. It was a game changer for me.
I don’t know how long I sat there before I peeled myself and my pregnant belly from the chair in the doctor’s office. I exited into a waiting room full of elderly people who were, from what I assume, living the same nightmare I was.
My mom and I walked out in silent shock, tears streaming down both of our faces.
In full disclosure, I didn’t really notice the age of the other patients sitting in the waiting room until I went to leave. Somehow, seeing a room full of people in a completely different generation made my diagnosis feel that much more catastrophic. I definitely stuck out like a sore thumb.
I didn’t belong there. Does anyone belong there?
The number of elderly patients in the waiting room is definitely something I’ve noticed at each appointment since this first one. I’ve even been skipped over at an appointment before because when the nurse went to call my name she, “Thought there was no way [I was] the patient because of how young [I was]”.
Sigh... I immediately felt very isolated and completely terrified. This experience taught me another important lesson. Age, race, gender, political preference... none of that matters when battling this disease. Finding a community of support is one of the best ways for us to not feel so alone.
Education is a superpower
Over the last 13 years, I’ve become extremely knowledgeable about the ins and outs of this disease. In the last 3 years, I’ve written many articles on the topic for Health Union’s maculardegeneration.net website.
I focus most of my time on advocating for living a healthy holistic lifestyle to combat this disease, and am especially passionate about helping others navigate the difficult emotions that accompany it.
Focus on mental health too
With a diagnosis of macular degeneration, we tend to focus a lot of time and energy on diet, nutrients, and vitamin supplementation. That's great! But, our holistic health doesn't stop there. All disease diagnoses have a mental health aspect. Macular degeneration is no different.
I’m here to highlight the importance of not only taking care of our eyes, but taking care of our mental health as well.
You know what having a degenerative eye disease does besides steal your vision? It tries to creep in and steal your joy too. Macular degeneration is a jerk. It makes everything else in life at least a little bit harder.
Take a stand and tell your story
I’m here taking a stand against this disease... Dear macular degeneration, you can’t have my joy. It's important for us to share our experience, strength and hope. If you're able and willing, telling your story could help others in more ways that you know!
I’ve written patient advocate articles for Health Union’s www.maculardegeneration.net website for 3 years now.
This company honest-to-goodness just wants to help as many as they can with the ins and outs of this disease (and many more). I know that their information is accurate and true. And, I know that it’s a safe place to go if you need to ask for help. At this website, we have actual humans (not robots) answering questions quickly.
There is a search tool on our website (the magnifying glass) that you can use to search for anything you want to read more about. For example, if you want to know more about vitamins or the AREDS formula, or more specifically how to keep vitamins from hurting your stomach - we have it all.
You can simply type "vitamins" in the search bar and a plethora of articles will pop up.
You can also search for all of my articles specifically by typing my name: Andrea Junge
Thank you for being a part of my journey
This brings me to the end of my diagnosis story. I hope that hearing these stories from others helps you to feel supported and seen. You are not alone.
We are here, happy to help in any way we can. We’d love to hear your stories too, and have a place for you to tell them on our website.
Thank you for being a part of my journey.
Have you tried blue light blocking glasses before?