The Emotional Stages of My Diagnosis

I’m extremely passionate about the mental health aspect of disease diagnoses.

Emotional and mental health impacts of macular degeneration

I recently realized, through my own healing process, that much like stages of grief, I have experienced emotional stages of my macular degeneration diagnosis. I can't help but to think that others have gone through (or are going through) the same stages.

Emotional stages of my diagnosis

Each of us experiences diagnosis differently because of personal needs and unique circumstances. However, if we look at a broad spectrum of feelings, we each have or will experience similar stages to processing our extreme vision loss. This article is about the stages I personally went through, mentally, with a new diagnosis of macular degeneration, NOT the stages of macular degeneration itself.

Stage 1: Shock, panic, and alarm

Wowza! Hearing that you have an incurable degenerative eye disease is quite a shock. How could it not be?

Couple that with the ‘there’s nothing we can do’ speech and the possibility of a needle being injected directly into your eyeball, and we’ve got a real panic situation on our hands. This stage feels scary and seems to last forever.

Even if you have family members with macular degeneration, your personal diagnosis can still hit hard. There’s no sugar coating this stage. However, it helps with expectations, normalizing our experiences, and knowing it won’t always feel this way. Deeeep breaths!

Stage 2: Acknowledgement and relief

This stage, though often still very uncomfortable, is a validation of symptoms and struggles. That wavy line or blurry spot in your vision… At least now you know what it is. Acknowledgment is the first step in moving forward and making a plan for what comes next!

That’s great news, allowing some much-needed relief from our original feelings of wonder and panic. Acknowledgment is different from acceptance.

Acceptance comes later in our healing process. However, acknowledgment is an extremely important part of the process. It lets us say, “Okay, I have this thing and I know I need to figure out what to do about it.”

Stage 3: Education frenzy

Relief may begin in the acknowledgment stage, but it continues on in the rest of them. Woohoo to THAT! The education frenzy stage is where we want to learn anything and everything about macular degeneration. We spend countless hours researching and reading because knowledge is power. In this stage, we realize there IS a lot that we can do to battle this disease.

Our website and Facebook page are great allies for this stage. Here, you can read the latest articles written by our team and see comments from other community members! You can also search keywords in our browser to look up anything you want to know. We write about everything from diet, nutrition, and mental health aspects of macular degeneration, all the way to current clinical trials and studies on the disease.

Stage 4: Grief

Remember that there are 5 official stages of grief. So, this step can take a while to fully process. Honestly, I’m not even sure we ever fully process grief. Grief changes over time, but in my experience, it’s always still there. It’s just up to each of us to decide how we will handle our grief. Will we let it rule our lives, or will we allow it to help us evolve and grow so that we can enjoy them?

It’s important to note here that grief comes out in many ways. Anger, sadness, depression, anxiety, and denial are all different manifestations of grief. Grief is complicated. And it isn’t just for people who have lost a loved one.

Stage 5: Acceptance

Acceptance is complex.

Some days we feel a sense of serenity and normalcy and then, BAM! The next day is filled with worry about the future. For me, acceptance is an everyday process. There may not ever be a permanent acceptance of all of the components of this diagnosis. But I do know that, over time, we learn to have a general sense of acceptance. We may not be okay with losing our central vision, but we can accept that it might happen.

Acceptance simply means we acknowledge it and are as okay as we can be in spite of it. This is a really difficult, but important part of healing. How do you get to the acceptance stage? This is different for all of us, but for me, it’s a combination of time, research, living a healthy lifestyle, being grateful for all the good in my life, working on my mental health, and focusing on what I CAN do about it all.

Stage 6: Gratitude

Yes, you read that correctly. Stage 6 is GRATITUDE!

Now, you may be thinking there’s no way you’ll ever be grateful for this diagnosis. You may even be thinking, ‘This woman is off her rocker’. But, I assure you, gratitude is possible - even probable for most of us. I’ve had to work hard on acceptance and my mental health to get here, but my macular degeneration diagnosis has been the catalyst for me living my best life. It has given me the permission I needed to stop worrying about the things I have no control over.

I’m not exactly happy that I have macular degeneration, but I’m not entirely mad at it either. Sure, some days and moments are hard. Some things are more difficult for me to do than for everyone else I know. Sometimes I have to ask for help. Sometimes I find myself balled up on my bathroom floor crying, wishing things were different. But, when I look at the bigger picture, I find myself being thankful for all this disease has taught me.

Hang in there! It gets better!

I hope this article has given each of you a sense of validation for your own experiences with your macular degeneration diagnosis. If you’re in stage 1, hang in there! It gets better!

Wishing you well,

Andrea Junge