Patient Stories: Living with Myopic Macular Degeneration

I have myopic macular degeneration, which in terms of symptoms is pretty similar to wet age-related macular degeneration. I have abnormal blood vessels that leak fluid into my eyes. For me the cause is severe myopia and the strain on my retina from it being stretched so thin.

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 which are actual blood that 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 every four weeks to my eye doctor. We check to see what’s happening – do 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 my biggest frustration or 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 as a result of this 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. All I could see were the headlights from the cars and the same with driving during snow or rain. I basically drive 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 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 caused by it being stretched so thin.

Sometime later I was looking at an Excel spreadsheet one day, 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. So, 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.

The very first thing was I got the news and then I was told I needed an injection in my eye. The panic over that, overtook anything else in terms of this is a condition you're going to have for life. It was initially feeling, I guess feeling a little lost or feeling isolated because I didn't know anything about it. I wasn't finding any information about it. I didn't know anybody else who had this diagnosis to talk to find out what your experience is, what have you 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.

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. You know, 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; you know, at least they can find one person. I have had a lot of people through Instagram or through my website sending me emails or messages. Especially a couple of weeks before they get their first injection, they're like can you kind of walk me through what the experience 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 was doing 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 to me in mind. I decided what am I learning can inform other people to improve it for other people with either visual issues or that impacts the way they're communicating online.

How has the COVID-19 pandemic affected your vision care as well as what goes on at your eye doctor’s office?

Because I go every four weeks and that's been for the past couple years, I've gotten to see the entire evolution of the eye care process. The doctor's office I go to is in a hospital. I think they, in particular, have had to gradually figure out what works and what doesn't for people who are going into that environment to make sure they're staying as safe as possible. Because my eyes are so unpredictable with getting bleeds, whether the benign ones or having the fluid from the blood vessels they want me to come in every four weeks continually. But I know they were cutting down on some appointments for people who were just going for monitoring. They were kind of limiting it to only people who they thought would probably need injections to make sure they keep their appointments.

The biggest change is there's only one doctor at a time seeing patients to limit the number of people you encounter. When I go to my appointments now, I'm the only one allowed to go into the building, but they have made sure that they're keeping both the patients and staff safe. They've gradually increased either physical or different types of barriers to keep you from interacting with staff. You can still see and talk to them, but they have plastic shields up to minimize their interaction with all the patients. They've limited how much you move once you're inside the office, typically when I went to my appointment, I would go to one room to have my eyes and pressure checked, I would go to a separate area of the hospital to have my OCT scans and photos taken and then go back to another room to meet with the doctor and then another room if I was to get an injection. Now they pretty much set it up, so you stay in one room almost your entire appointment. They walk you over to where you're getting your scans and they have one person there at a time and they walk you back to your room and then if you must get an injection, they'll move you to the more sterilized area.

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

My husband will take me to and from appointments and he'll help 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.

How has the COVID-19 pandemic changed your personal life?

I'm somebody who travels a lot, so I think the biggest impact is that I don't leave my house as much. Some of that is because of my appointments I want to self-quarantine for a week or two just in case I encounter something or somebody who had the virus while I was in the hospital. So, I personally make sure I stay home probably more than most people just so I don't accidentally give it to somebody because I'm asymptomatic. So, I think being just being in my house a little more is one of the biggest changes.

But there are a lot of positive things that I've seen come from this. Because I don't drive at night or in a lot of situations, I've loved that so many things have become virtual. So now get-togethers with friends or being able to work remotely or other things that would have made me anxious trying to figure out the logistics that I don't need to worry about anymore. Because everybody else is trying to figure out the same logistics now, there's been a lot of improvements in terms of accessibility. Everybody is dealing with them so now they're realizing we need to invest more in allowing people to have these kinds of meetings virtually.

It's stressful for everybody, and I know I have a lot more anxiety now than I used to for a number of different reasons. But there are definitely things that have happened as a result of COVID that I'm hoping stick around once we are able to get outdoors and get out of our houses a little more.

What’s the first thing you want to do once the pandemic is over?

This is going to make me emotional, the first thing I want to do is see my grandparents in person. I know I'm very lucky, at my age, to still have both of my mom's parents. They're here, but I can't see them because I don’t want to take a chance of being asymptomatic and exposing them. I know that's hard for them not being able to see most of us in person. I want to see them, because it's very hard thinking I must avoid them to make sure that they stay safe, but there's also the very real possibility I might not get to see them again. So as soon as I can, that's the number one thing.

My family is very, very close. We've had some virtual parties. My grandmom had her 96th birthday, so we've had virtual birthday parties for them, but it's not being able to be near my family. To make sure we're all staying safe is very difficult, so that's the very first thing is to go over to their house and give them giant hugs.

Concluding Thoughts

One other thing to share for anybody who is experiencing any kind of 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 communities online of people who are dealing with a number of different vision issues. I think it's important to connect with that. Especially now when we are not able to get together in person. I think 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 for that problem. 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.