Living With Myopic Macular Degeneration

Theresa Mabe was diagnosed with myopic macular degeneration, which has similar symptoms as wet age-related macular degeneration, in her late 20s. When she was diagnosed, there were few resources to guide her; today, she serves as a resource for others.

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How long have you been living with macular degeneration, and how did you feel when you were diagnosed?

I was diagnosed six years ago when I was in my late twenties. I've seen changes to my vision since then. I always had bad vision. I had bifocals when I was eight. Severe myopia is something I've always had. I didn't necessarily have a name for it ,which I guess is technically degenerative myopia or pathological myopia. I had some eye tests done a few years before I got diagnosed. They diagnosed lattice degeneration in my retinas, which is a lot of little, tiny holes in your retina caused by it being stretched so thin.

Some time later, I was looking at an Excel spreadsheet and the lines got really wavy and it felt like I had an oil slick in my eye. I was like, this is this is not right; this is not good. I called my eye doctor and they said to see a retina specialist.

Fortunately, I already had one. It was a little bit longer before he was able to diagnose me with myopic macular degeneration. They weren't entirely sure that's what it was at first.

After I got the news, I was told I needed an injection in my eye. The panic over that overtook the fact that I was diagnosed with a condition I am going to have for life. I initially felt a little lost and isolated because I didn't know anything about it. I couldn’t find any information. I didn't know anybody else who had this diagnosis to find out what their experience was like and what they had been through so far. It was very rough initially, just not being able to learn or understand what it would mean for me in the long term.

What are the daily challenges you face with myopic macular degeneration?

There's what are called “benign bleeds” versus “regular bleeds.” I tend to get more of the benign bleeds, in which actual blood gets into my eye through cracks in my retina from it being stretched so thin. Frequently I'll get these spots in my eyes that, until I go to the doctor, I don't know what type of bleed it is—if it's the fluid from a blood vessel or if it's just actual blood. I get these at least once a month, so that's part of the reason I go to my eye doctor every four weeks. We check to see what’s happening and if I need an injection or will it resolve itself on its own. It makes it a little bit stressful.

But I'd say that because my eyes constantly have spots in them, that's probably the biggest hurdle that I have dealing with macular degeneration. It's not just the long-term impacts from the scarring when I get the actual fluid in my eyes, but it's every day I'll have just some kind of shadowy area in my vision that impacts what I'm able to do day to day. If my eyes are fluid-free, I can drive during the day in clear weather. I stopped driving at night a few years ago. Not just because of the fluid or the scarring, but one of the symptoms that I have is photophobia, which is an extreme sensitivity to light. The headlights from other cars would wash out my vision entirely so I couldn't see anything else. I drive only if I know where I'm going or if it's clear or fine conditions outside. I can operate a car, but every appointment I go to now, my doctor's like, “You're borderline for being able to drive with your regular license.” I know there are options like low vision training that you can have. I forget the specific qualifications, but if you meet certain low-vision standards you can get extra training and then have a specific code on your license so you can drive during the day. But I do that voluntarily, I don't want to drive at night. It's not a good feeling for me. Nobody else wants that.

How does talking about your diagnosis help others with macular degeneration?

I decided if I'm going through this right now, if I'm feeling alone or confused because I don't understand what's going on and I'm not finding information when I'm searching for it, others must be too. That's something I can provide for other people. I can share my story. Somebody else is getting diagnosed and looking for information or they're looking for a person to connect with; at least they can find one person. I have had a lot of people through Instagram or through my website send me emails or messages. Especially a couple of weeks before they get their first injection, they ask, “Can you walk me through what the experience was like?” or, “I've been feeling frustrated about this, can you give me advice on how you've handled it?” It's been really rewarding to be able to be a resource for other people that I wish I had when I was diagnosed.

In terms of accessibility, I took some online courses when I got diagnosed, and I realized that a lot of digital environments were not developed with people who had similar needs as me in mind. I decided what I am learning can help improve things online for other people with visual issues.

How have you been managing your vision care over the years? Do you have a care partner?

My husband takes me to and from appointments and helps me around the house, but for the most part I like to be self-sufficient, so I try to do as much as I can on my own. I just need to prove to myself that I can still do things to retain my independence as long as I can.

Concluding thoughts

One other thing to share for anybody who is experiencing vision issues—because it can be a very isolating situation, not just because you can't find other people who are experiencing what you're going through, but there's no way to really make anyone else see exactly what you're seeing: There are a lot of online communities of people who are dealing with a number of different vision issues. I think it's important to connect with that. Finding that helps you in terms of having resources or asking questions. Another important benefit is being able to vent your frustrations without having somebody try and solve it or come up with a resolution. You just want someone to say, “Yeah, I totally get what you're going through, and it sucks or it's frustrating.” I'd say making sure that you find a community of people who you can share this experience with even though it's all slightly different and none of us will know exactly what the other one's going through. It's just crucial to have that outlet or to have those resources available.‍

This interview has been edited for clarity. 

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