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DIANE BOVENKAMP: Hello, and welcome. My name is Dr. Diane Bovenkamp, Vice President of Scientific Affairs at BrightFocus Foundation. I am pleased to be your host for today’s Macular Chat, “Caring for Your Mental Health After AMD Diagnosis.” Macular Chats are a monthly program—supported in part by educational funding from Astellas, Genentech, and Regeneron—designed to provide people living with macular degeneration and the family and friends who support them with information straight from the experts. The information provided in this program is for educational purposes only and should not be considered medical advice. Please always consult a qualified health care professional regarding any medical concerns or conditions. BrightFocus Foundation’s Macular Degeneration Research Program has supported nearly $53 million in scientific grants exploring the root causes of potential preventions, treatments, leading towards a cure eventually for macular degeneration, and it’s currently investing in 49 active projects across the globe.
Now, I’d love to introduce today’s guest speaker. Ed McDaniel has been a psychologist for people with disabilities since 1987. He has vision and hearing loss due to retinitis pigmentosa and Usher syndrome type 2A. He is semi-retired and works part-time in a private practice and for the North Carolina Division of Services for the Blind. He facilitates in-person and online vision loss support groups. He enjoys running with his guide dog, too. Thank you for joining us today, Ed.
ED MCDANIEL: Thank you, Diane. I appreciate the opportunity to discuss a topic that’s important to me. I hope it will be helpful to your listeners.
DIANE BOVENKAMP: Absolutely. So, May is Mental Health Awareness Month, and even though we’re nearing the end of the month, it’s still an important topic throughout the year. According to the Centers for Disease Control and Prevention, roughly one in four adults with vision loss have reported anxiety or depression. Ed, will you please start us off by discussing what the role of a mental health specialist is and how that differs from the role of an eye care professional?
ED MCDANIEL: Sure. Mental health professionals’ role is primarily to help clients understand and cope with thoughts, feelings, and behaviors so they’re better able to do what’s important to them. Of course, eye care professionals, their primary focus and role is to maintain and restore vision and eye health. Although, very often the eye care professionals are the ones who have the initial and primary care and ongoing opportunity to see patients. So, their interactions with the patient are very important to recognize any mental health concerns and to see how the person is doing as a whole and hopefully be knowledgeable of resources and make referrals to mental health professionals.
DIANE BOVENKAMP: Yeah, so it’s almost like you’re working in a team, the mental health specialist and the ophthalmologist or eye care professional.
ED MCDANIEL: Definitely. That’s the most ideal way for it to happen. It doesn’t always happen that way, but that is ideally what should happen.
DIANE BOVENKAMP: Great, so more education. So, hopefully we’ll send out this podcast to health care professionals as well. So, my next question is: What would be some of the emotions an individual might experience after a diagnosis of age-related macular degeneration, geographic atrophy, or another vision disease?
ED MCDANIEL: I think most often in the beginning, people may experience shock and disbelief, and also some anger, questioning, “Why me?” Sadness, anxiety, particularly worrying about their future, a sense of loss and grief, loss of independence, and loss of identity as they maybe lose some of the abilities of things that they were able to do before.
DIANE BOVENKAMP: Yeah, that sounds like many of the stages you go through if you’ve lost someone that you love, I guess, losing a major ability like that is no different.
ED MCDANIEL: Right.
DIANE BOVENKAMP: And actually, I’m just going to add in here there actually is a question that a listener just put in that is related to this question. They said, “Feeling anxiety is a big part of it, and you mentioned that. What are some strategies for reducing anxiety, especially when living alone with vision loss?”
ED MCDANIEL: Well, the first thing I would say is that it’s a very normal response to feel that. Certainly, when we experience some kind of a loss that’s unexpected—in particular, when you are dealing with a progressive vision loss—the uncertainty increases your anxiety because you don’t really know what’s going to happen. You might have some ideas, but when you have a progressive loss and you’re receiving treatment, sometimes they help and sometimes they don’t. It’s normal to feel that. So, as far as managing that, I think it’s important to allow yourself to acknowledge and have those feelings. A lot of times we may want to try to suppress some of our anxiety or to make it go away, but actually what happens when we do that is we may actually increase the intensity or the frequency or duration of these feelings if we don’t allow ourselves to experience them.
DIANE BOVENKAMP: So, that’s why it might be very, very important to go to a counselor such as yourself to try and work through these feelings.
ED MCDANIEL: Yeah, definitely. Of course, you know, it’s normal to go through that, but if you feel like you’re not able to move through that on your own or it is prolonged and it’s interfering with your functioning, definitely that’s a point where you want to take that opportunity to get help from a professional.
DIANE BOVENKAMP: Great. That’s really good advice. And I think, obviously, we can’t help ourselves unless we recognize that we’re feeling them, right? So, why is it really important for individuals and/or the people around us—care partners, friends, family—to recognize these emotions as signs of needing additional support and maybe even raise the conversation to eye doctors or primary care doctors?
ED MCDANIEL: Well, as I was saying earlier, it is important to remember that, you know, the emotions that we have are normal. Those in themselves are not problematic. The emotions that we have is really our mind’s way of alerting us to difficulties so that we can prepare ourselves and motivate ourselves to solve problems. And, of course, it takes time to work through emotion. You know, when you’re grieving, it’s a process. It’s not something that happens quickly a lot of times. In particular, as I said before, when you’re dealing with vision loss that’s progressive or fluctuating, that really even complicates it more. But when our emotions are overwhelming us and we’re no longer doing what’s important to us, if we’re feeling stuck and we’re not doing the things that we used to do or if we’re engaging in avoidance behaviors that may be harmful, and all of these emotions are prolonged. If we’re doing things like spending a whole lot of time distracting ourselves or if we’re denying, avoiding, withdrawing or isolating ourselves, those are really the warning signs. The emotions themselves are normal, but when our emotions kind of lead to behaviors that aren’t helpful, that’s definitely when we want to seek help. And, of course, you know, early intervention is always recommended. So, when you start to see some signs, get help early on. And really, I mean, you don’t have to wait. I would recommend to anybody going through a loss, like a loss of vision, to seek out help, because you know, that was something I did myself as I started to experience vision loss. So, even though I’m a psychologist, I felt like that was important for me to meet with a mental health professional, as well.
DIANE BOVENKAMP: That’s really good advice. That’s kind of like “physician heal thyself,” that you recognized that you needed help too, even though you help others. I guess after discussing the desire to focus on your mental health with your eye doctor … so, let’s say we feel those emotions and that it’s restricting what we’re normally doing, and you recognize that you need help. Okay. What’s the next step? Do they recommend a mental health professional, or what is there that we can do? I know there is a lot of stigma associated with going to a health professional, but we all do need help, right?
ED MCDANIEL: Exactly. And hopefully, the eye doctor that you have is one who will listen to your concerns related to your mental health. However, you know, for me personally and for a lot of people that I’ve worked with over the years, people who had vision loss, oftentimes the eye care professional isn’t always the one who is making the referral. I think more often you may see a primary care provider is more likely to do screening for mental health issues. I think that’s much more common, particularly if you’re going for your annual checkup. A lot of times they will ask mental health screening questions. I haven’t experienced that as much with eye care professionals, and if you have gotten that, that’s great and that’s wonderful. I think more attention is being brought to the importance of mental health services for people with vision loss, but overall, I think I’m not seeing that from the people that I work with. But certainly I think mental health professionals and eye care professionals need to collaborate, contact each other, know what their referral options are. And so, that’s something that I am working on as a mental health professional, is making those contacts with eye care professionals.
DIANE BOVENKAMP: Yeah, and I think we were going to talk about this a little later in the resources session, but one of the things I wanted to mention is there are groups like the National Federation of the Blind that can help you gain confidence to gain those skills back, like working in the kitchen, kind of like an occupational therapy or something. And I know that the National Federation of the Blind—I’m just using that as an example because it’s in Baltimore, where I lived for a long time—and they have “how to navigate around the city.” The final exam is they drop you off somewhere and you have to make your way back to the building. And I know there are people who have been blind who have, like, climbed mountains and whatnot, can do more things even than people who have the full range of sight. So, I think just trying to get … there’s more resources than your primary care physician, as well.
ED MCDANIEL: Certainly, there are so many resources out there. And most states are going to have something called, like, Services for the Blind, and that’s a really good, more local, regional, or state resource that has a lot of knowledge of services and provide a lot of different services. Unfortunately, one of the things that I see happen very often is that people who have not really adequately dealt with the loss of their vision from an emotional standpoint, a lot of times they are not seeking out these resources and learning adaptation because they’re avoiding and not really come to a level of acceptance where they’re ready to seek help. And so, a lot of times someone might not contact Services for the Blind for a long time until they actually need some support. So, there may be a period of time when the person is first diagnosed and the only real professional that they are having regular contact with is the eye care professional, and so there can be a lag sometimes. There can be a number of years even before someone has really reached out for additional help that’s available.
DIANE BOVENKAMP: Yeah, I guess everybody has to come to that decision in their own time. Maybe what you can do is you can give people a little bit of an idea of your personal journey. So, you know, as we heard in your bio, you’re personally living with vision and hearing loss due to retinitis pigmentosa and Usher syndrome type 2A. And I guess maybe you can give a little bit of a story of how you got to get the help to be the confident person that you are today, and has that impacted the way you connect with your patients as a psychologist?
ED MCDANIEL: Sure. I can say it has been a long journey for me, and looking back, I can see how far I’ve come, but I do remember those early days after I was first diagnosed, how difficult that was. I really felt overwhelmed. I was worried about my future. It was a lot, and so I really can empathize with people who are going through that. And again, in the beginning, it was something that was very difficult for me to share with other people. And at that point, it was really a hidden disability because people did not know unless they were very close to me, even realized that I was experiencing vision loss in the beginning. So, I was able to hide it. I was able to avoid, and some denial was going on there in the beginning, and that’s normal. But over time when it impacted, for example, my driving, when I had to give up driving, that was very difficult, and that was when I decided for myself to see a mental health professional to have someone to work through that loss. And that was really the first time that I sought help, was when I faced that major transition that was related to my vision loss.
DIANE BOVENKAMP: Yeah. And I think that if some people say, “Oh, well, my insurance doesn’t cover it,” I’m sure that there are state or other programs you can tell us about later on where they might be able to get access if they just ask about it, right?
ED MCDANIEL: Yeah, certainly. For people that don’t have insurance, I know that here in North Carolina there’s a nonprofit that provides counseling to people who don’t have insurance. Certainly a lot of times, if people can, they can apply for Medicaid or Medicare, and sometimes get insurance that way. So, there are some options out there for people who don’t have insurance.
DIANE BOVENKAMP: Oh, great. Well, thank you so much for your service. I mean, I’m glad that you sound like you would be someone who’s very empathetic and compassionate, and people would be lucky to have you as their counselor. Do you have any recommendations for our listeners on how to talk about their feelings with friends and family who may not know what it’s like to have macular degeneration or geographic atrophy?
ED MCDANIEL: Sure. I remember when I was first diagnosed, I wasn’t able to talk about my vision loss without really, I think, feeling so emotional that my voice was shaking about it. And so, it’s normal for it to be difficult to talk about, but it is something that is important for a lot of reasons. Certainly holding our feelings inside is not going to help us in the long run. And also, it’s important for us to let our friends and family know what kind of supports we need from them. So, give yourself some grace and self-compassion and know that it’s not going to be easy for a lot of people in the beginning.
The other thing is, when you’re sharing with family and friends, they may not always respond the way that you want them to respond. A lot of times our friends and family are experiencing loss along with us. It may be difficult for them, as well, or sometimes they may not know what to say or to do, and sometimes they may say and do things that aren’t that helpful. And so, sometimes we have to be selective in who we share with, and that’s important to recognize with self-disclosure when we do that, who we do that with, how we do that. Because not everyone is going to be maybe as supportive or understanding as we want them to be, particularly in the beginning. It may take a while for them to get what’s going on, but certainly we want to keep trying to help others understand—particularly those that are close to us that we have an ongoing relationship with. It’s important for us to do that. And sometimes maybe we told them one time, but we might have to tell them again, because we’re experiencing vision loss every day and all the time, whereas they are kind of used to you being able to do things a certain way, and that may be changing, and they don’t understand that or forget that sometimes.
DIANE BOVENKAMP: Yeah, I know. No matter what the age … I think, like, for grandkids, we actually have this little magazine for trying to explain what is macular degeneration to kids, and one of the things they can help is, like, “If you go to visit grandma and grandpa, don’t move things from the spot where they are.” You know what I mean? Right? Because that could spell catastrophe. So, there’s little things that people can do, but, yeah, I guess it’s very important to—if you are wanting to disclose your emotions—to make sure that you do it with someone that you trust and that you feel the timing is correct. So, we have another question I’m just going to throw in there. People are really responding to your personal story, and one of the questions that they had was: What did you do when you gave up driving? Do you rely on others, use Uber or, ITNAmerica ride share finder? What did you do?
ED MCDANIEL: Well, when I gave up driving, I was 29 years old. I was a young professional. I was single, and it was just a shock when I learned that I was losing my vision and I knew I was at some point going to have to give up driving. And so, I made some major changes. I left a job that I loved in an area that I loved to move back to my hometown to be close to family. And in the job that I had at the time I was diagnosed, I was having to drive. I worked in schools with children, and so I had to drive from school to school. So, I found a job where I was able to … first of all, I bought a home that was within walking distance of where I worked, and I worked for a school system where all the schools were on one campus, so I could walk to the different buildings on my own. So, I had to make some pretty dramatic changes in my life to adapt, and that was not easy, but it was the right and practical decision for me. Over time, and I had some other jobs after that, if I moved, I would buy a home that was within walking distance of where I worked. I had family members who were able to provide support with transportation when I needed it, but sometimes they weren’t available, so I had the option to walk. And that’s what I still do today. I live alone, and I have a guide dog. My office that I work at is a mile away from my house, and we walk to work, and for my other part-time job I have an office that’s an hour away, and I ride with coworkers. I have groceries delivered, and I use DoorDash and things like that to get around.
DIANE BOVENKAMP: Yeah, you make a good point that a lot of the conveniences that probably came up during the COVID lockdown, like with all these deliveries and whatnot, are probably things that we could take advantage of now. So, yeah, that’s really interesting to maybe sit down and try and evaluate our own lives and decide what makes us happy, and that sounds like you had a really wonderful plan. I think I have a few more questions that came in. I’m going to ask them at the end. The next question I wanted to ask was: While living with macular degeneration, our emotions will likely change and evolve. So, at the time of initial diagnosis, we may feel shocked or scared. And as time progresses, you know, feelings of frustration or grief might come about. And this kind of goes back to the question we kind of asked earlier: What coping mechanisms or strategies do you suggest for dealing with the changing scope of emotions?
ED MCDANIEL: You know, as I’ve said a couple of times before, and I think this is still very important, and I’m going to say it again, is allow yourself to have those thoughts and feelings. They are normal, and with a progressive or fluctuating loss, you might have some emotions and work through them, and then something else comes along with the progression, and they come right back. So, it’s an ongoing thing, but certainly suppressing those thoughts and feelings is not going to be helpful. And so, a lot of times also what happens is we spend a lot of time thinking about our future, worrying about what’s going to happen in the future, or we spend a lot of time thinking about the way things used to be, wishing they hadn’t changed. So, one of the things I work with people on is focusing on what we can do here and now and putting our energy there because certainly it’s normal to think about the future and the past, but the amount of time that we do that may not be productive.
The other thing that I work with people on is finding ways to stay engaged, you know, doing what’s important to us, and a lot of times that means doing things differently. You know, you mentioned in my bio about me being a runner, and certainly, I’ve had to make adaptations as a runner over the years as my vision has gotten progressively worse. I have a guide dog that’s trained as a running guide, and I’ve run with human guides in races, and so that’s just an example, running is something that’s very important to me, but I’ve found ways to continue doing that. Other runners I know who are blind may run on a treadmill. So, there’s things that we can do to adapt and change what we do and still enjoy those things. We may have to do things differently. One of the, I think, the most important things that we can do is connect with other people who have vision loss. We can do that certainly in support groups, going to conferences, connecting with people on social media. I can’t tell you how helpful it has been to me over the years to connect with other people who have vision loss. We learn so much from each other, and it helps us not to feel like we’re the only one, that we’re not alone in this and there are other people. So, those are just a few of the things. I mean, there’s so many things that we can do to work through those emotions and difficult thoughts, but those are just a few.
DIANE BOVENKAMP: Yeah, so, empowerment and support. And jumping off that second one, there was a question that came through about: What do you recommend for support groups, and where do you find these groups? I know that BrightFocus has an AMD Community Circle support group, but there must be many, many others, as well.
ED MCDANIEL: There are, but, you know, sometimes they can be difficult to find. One of my goals here in North Carolina is to create a directory of groups, because when I started attending a support group, I was involved with an online group that was in another area. And I started looking at the particular area where I live and was trying to find out if there was a group there, but a lot of people, when I would ask, they weren’t sure or they didn’t know. So, that’s one of my goals, is to create a directory here in North Carolina for people in this state. But there are some national organizations that post online a list of groups. There are a lot of online groups, and, of course, you know they don’t have to be local. I’ve been involved with groups from people all over the country, and even other countries, as well. So, contact them. And we’re going to get a little bit more into some of the resources, and I’ll list some of those, but there are a lot of national organizations that have a list of different groups to join, but some people prefer in person. And the groups that I facilitate, that’s why I started them, because there was not a local group in my community, so I decided to start an in-person group, and then I also started more of a regional online group. And you don’t have to be a mental health professional to start a group, and you may be amazed at how many people will join your group if you start one. So, I would encourage you to consider that as a possibility, as well. And one of the things that I’m working on is collaborating with people who want to start groups.
DIANE BOVENKAMP: Great. So, why don’t we just move into this detailed list of resources and support that you have? I mean, there’s a ton of great resources out there. Can you mention just a few of them that help you specifically or that you recommend to your patients or friends?
ED MCDANIEL: Well, certainly, of course, BrightFocus has a wonderful website with so much information. I would imagine a lot of your listeners are familiar with your website and all the resources on that site, and also the support group and these Macular Chats. I’m seeing a lot of organizations like BrightFocus provide an opportunity to increase awareness of mental health. I’m seeing that a lot more just in the last 2 or 3 years. I think there’s much more emphasis and focus on that, with a lot of these organizations that are large organizations that their primary goal might be something other than mental health, you know, like raising money for research and things like that but are incorporating information about mental health in there, as well.
Some of the other organizations that I’ve been involved with, the Foundation Fighting Blindness, again, that is primarily a research organization, but they also have information that’s helpful. You had mentioned the National Federation of the Blind. There’s also the American Council of the Blind, and those two are what I would consider advocacy kinds of organizations that are run by people who had vision loss, and they provide a lot of information and resources, and they also run some programs that are more hands-on kinds of things. Certainly, as I mentioned before, your state division of Services for the Blind—they can provide things like training on assistive technology, vocational rehabilitation, independent living, orientation and mobility. Another wonderful organization that I’ve been very involved with is Hadley. They provide a lot of information about living with vision loss, and that’s an organization that’s been around a long time, for more than 100 years.
And one thing that is not specific to vision loss that I did want to mention while we’re talking about resources is for many years, if you were in crisis with mental health, there was, like, an 800 number, but now there’s a simple number, it’s 988. So, instead of being like 911, it’s 988. So, if any of you all are ever in a crisis and you need someone to talk to, if you are ever having any thoughts that life is not worth living and you need somebody immediately to talk to, you dial 988. It’s a national number, but what happens is they route your call to the state level, and so you’re able to talk to someone who can provide immediate help and also provide resources in your area.
DIANE BOVENKAMP: That’s amazing. I can’t believe I didn’t know about that until now, so I’d definitely let people know about that. And I think there’s one other thing that we had talked about before was there’s a Prevent Blindness ASPECT Program that you were involved in.
ED MCDANIEL: Yeah, and that is a training that I received, and a number of people with vision loss have gone through that training. It is an advocacy training program, and it teaches people how to tell their personal stories of their vision loss and in a way to advocate for whatever their particular interest is. Of course, in my case, being a mental health professional, when I went through that program, I focused on advocating for support groups and also for mental health services for people with vision loss. And one of the things they do every 2 years, this group of people who have been trained, is they go to Washington, D.C., to meet with legislators to talk about different pieces of legislation that impact people with vision loss.
DIANE BOVENKAMP: Okay, great. Thank you. Well, I think that I have a couple of more questions here before we get to the end. I know one of the questions that someone had earlier was: When you’re talking about seeking a therapist, do you need to go to a therapist who is knowledgeable about AMD or geographic atrophy, or does that matter?
ED MCDANIEL: If you can find that, that is ideal. One of the things that I hear from people … a lot of times I will ask someone if they have seen a mental health professional, and a lot of times they will say yes, and then they’ll say, “But that person doesn’t really understand what I’m experiencing, and I have to explain everything to them.” And I know that can be frustrating, but that is unfortunately very often the case. There are some initiatives happening right now where people are trying to provide training to mental health professionals about vision loss so that even though, like in my case, someone who has vision loss and obviously has that personal experience, at least, there are some trainings available to mental health professionals who can become more knowledgeable. And I think that really does help and make a difference, but unfortunately, it may be difficult to find someone with that knowledge.
DIANE BOVENKAMP: Great. There’s this one question that we have that someone said: I have so many regrets in this life. I’m 58, never got to see and experience travel. This makes me angry and depressed. How can I deal with this? Many people are probably feeling the same way, so what would you say to them?
ED MCDANIEL: Yeah, again, those are perfectly normal feelings to have. And I think it’s very common for people to feel regret and anger. And so, as far as how to deal with that, again, you know, I’m going to repeat myself: Don’t suppress that anger. Let yourself feel those feelings. And I even when I was going through it myself, the word that I would use is I allowed myself to wallow in those feelings for a while and to really experience and have those feelings, but once I let myself do that, I made the decision, “Okay, I’ve wallowed long enough in my misery. It’s time for me to move forward.” And when I did that, that was when I started to seek out resources that were helpful to me. And because I allowed myself to experience those things, I was eventually able to move forward. And for me, that meant, you know, talking to a mental health professional, that meant contacting Services for the Blind, for help with orientation and mobility.
But the other thing I would say in that particular case is that, okay, certainly when we lose our vision there are some missed opportunities that we regret or things that we maybe can’t experience the way that we had hoped to experience them, but that doesn’t mean that we can’t still do a lot of things and do them differently. But of course, that doesn’t take away from those difficult feelings that we’ve had, but there’s so many things that we can do. To give you an example, you mentioned travel, there are a number of groups of people with vision loss who are doing things like going on cruises together. There’s a whole group of people with vision loss going on a cruise. And then, one of the things that I’ve had experience with where a group of people with my eye condition, RP, where we got together in a city, and for a number of years, this group will go to a different city to where they can interact with each other, travel together. The place when I went to, it was Philadelphia, and we toured Philadelphia together as a group, and I’m sure we were a sight to see because, you know, a lot of people with canes and guide dogs descended on the city. And so, yes, certainly it’s different, and you may have some feelings about that, but there’s still so many things that we can do and enjoy. We just may have to come to a level of acceptance that it’s going to be different.
DIANE BOVENKAMP: And there are so many other senses, so you can still travel and maybe go to explore the smell and the taste of a new city. Go to Italy and learn how to make pasta. You know, it’s just a different way to experience it. Yeah, so changing expectations, I guess, and being empowered. Those are, I think, two things to take away from today. Well, Ed, thank you so much for sharing your professional advice on how to care for one’s own mental health while you’re also on a personal journey with vision loss. And the information and resources you shared with us today are so invaluable, especially I’m going to try and remember that 988 for any friends who are experiencing a mental health crisis. So, Ed, before we close, do you have any final thoughts for our audience?
ED MCDANIEL: Yes. I want to end with a quote from Helen Keller, and the quote is, “Although the world is full of suffering, it is also full of the overcoming of it.” And the reason I like that quote is because it recognizes that suffering is universal. We all suffer, but we’re not alone, and there is hope. And I appreciate what BrightFocus is doing to promote mental health awareness and to empower people and to give them hope. So, thank you.
DIANE BOVENKAMP: Thank you so much. You have been so inspirational, and I hope that many of our listeners and everybody in the podcast, hope that you touch thousands and thousands of lives, so thank you so much.
ED MCDANIEL: Thank you.
DIANE BOVENKAMP: We will be taking a short break for the month of June, and our next Macular Chat will be on Wednesday, July 30, on the topic of “Vitamins and Supplements for AMD.” This concludes today’s Macular Chat.
Useful Resources and Key Terms
BrightFocus Foundation: (800) 437-2423 or visit us at www.BrightFocus.org. Available resources include—
Helpful low vision tools or resources mentioned during the Chat include—
- State services for the blind
