When it comes to acromegaly and its effects on patients’ lives, the focus is usually on the physical: somatic growth, headaches, joint pain. This aspect of the disease is, naturally, important to address. But so is an often-overlooked side of having a rare and relatively unknown disease like acromegaly: the effect it can have on a patient’s mental well-being. Challenges with getting a proper and timely diagnosis, finding a knowledgeable doctor who can help, undergoing sometimes painful treatments, and controlling chronic physical symptoms can lead to feeling of depression, isolation, hopelessness, and more.

To gain a better understanding of the psychological challenges acromegaly patients face, to share important insights, and to identify coping mechanisms that may help, we recently spoke with two professional therapists who bring valuable perspectives to the conversation –– genuine viewpoints that arise from lived experiences, which the acromegaly community should hear.

Shawn Atchley, MSW is more than a social worker. He is also a doctor of ministry and holds a masters in divinity. Perhaps most noteworthy: he also has acromegaly and knows first-hand the physical and mental challenges acromegalics face in life.

Linda Rio, MA, LMFT is a prominent advocate for people with acromegaly and other pituitary diseases who has written, published, and spoken on this subject for several years. She is a contributor and co-editor of Pituitary Disorders: Diagnosis and Management, and the author of several pieces on PituitaryWorldNews.org.

Acromegaly Support (AS): Let’s start with you, Shawn. What was it like for you reaching a diagnosis?

Shawn Atchley: My journey began around 2007 when I started to have skin infections, an overgrowth of gums, and some immune issues. I didn’t know what it was. I began to have headaches on the left side so my primary care doctor sent me for an MRI and it showed about an 8mm pituitary tumor.

Then I went to an endocrinologist who was highly recommended, who did testing and missed the acromegaly. So I went back a year later and my tumor was 9mm. He did blood tests, and I ended up with a doctor who took the tumor out through my nose.

After that, I saw some endocrinologists at a local university and ended up with another doctor. My acromegaly was mostly under control at that point.

Presently, my numbers are slightly up as we try to transition from shots, which have been leaving knots all over my body. Now my IGF-1 is probably running near 300, so I will soon be upping my medication and hopefully that gets it under control. I’ve had no tumor regrowth in the past ten years, and my numbers are floating around, but generally I’m in pretty good shape.

AS: Sounds like it was a frustrating journey.

Shawn: The emotional journey was not so much frustration or anger. I just was determined to get to the bedrock of the situation. The doctor should have known what the problem was in 2008, with my overgrowth of gums. No one caught it. How an endocrinologist can miss it by not giving a blood test, particularly one highly recommended in the press, is a question. But it was a pretty straightforward issue for me. The neurosurgeon showed me the MRI. There it was. There wasn’t a question about it. Then he took care of it.

When I woke up from the surgery, the first thing I talked about was how I thought my body was oddly shaped. I was concerned because I had spent 15-20 years preparing for my profession – and who wants to go to a beast, a monster to see a therapist?

AS: Linda, how did you come to specialize in clients with pituitary disorders?

Linda Rio: It’s a real odd specialty and virtually unknown amongst my peers. How I got into this is very strange and a little circuitous. A neighbor told me he had acromegaly at a party I hosted and said that as a mental health professional I should know about it. I had never heard of acromegaly let alone pituitary disorders, and I was busy being a hostess so I dismissed him.

Several years later I attended a party at his house and he again approached me. Now, a few months beforehand I had slipped and fallen on ice. I was very concussed for months and I think it helped open my mind to something new. So this time I agreed to look at the website. I then did my own research and couldn’t figure out why, in my graduate training and all the years since, I hadn’t heard about acromegaly.

I felt horrified because I pride myself on being on top of my profession. I agreed to write one article and that turned into a book, and it turned into a pretty big specialty for me. It became a passion after hearing stories from so many patients and their family members about how many doctors, how many therapists, how many psychiatrists, psychologists, all kinds of people they had been to and had been shunned, or been told they were crazy. I spent years going through this process and I felt that that’s just wrong. And so that’s why I’m here today.

AS: Do your clients express relief in having finally found you?

Linda: That has probably been the biggest reinforcer for me to continue this work. I get phone calls, I get emails fairly frequently, and very often after I’ve done a speaking engagement of one kind or another. When somebody connects with me there’s just this instant awareness on their behalf that finally somebody gets them. They’ve talked to lots of different people, professionals and non-professionals, who just don’t understand the struggle, the nuances of having one of these illnesses, and they’re so relieved when they talk to me.

And that’s not unique to these illnesses. I’ve talked to so many patients and their families and I’ve done so much research, I get it as much as I can and it seems to really make a difference. And you can just tell in somebody’s voice. There are fewer words needed between us and there’s just a softening, almost like a big sigh of relief, of “Finally there’s somebody who understands this.”

AS: Has anything surprised you, Linda, about the people you’ve seen?

Linda: The biggest surprise has been the length of time it takes before they get an accurate diagnosis. It’s better than it was when I first came into all of this, but the number of years and the number of professionals, medical as well as mental health, that people have seen before they get an accurate diagnosis. That pains me.

What hasn’t surprised me is the impact on the family and other people around someone who has a diagnosis. That’s not a surprise at all. I think it’s because of the length of time it’s taken to get a diagnosis and particularly for acromegaly. There are so many factors that influence the patient themselves, physically as well as emotionally and psychologically, and that affects everybody around them. Those are things that not only surprised me, but impact me personally on an emotional level, that pain people have had to go through.

AS: Shawn, has having acromegaly affected the way you approach your job?

Shawn: As a social worker, I want to solve the problem because if I don’t solve the problem, my fear paralyzes me and I can’t do my job. I can’t sit with clients being a victim. I can’t sit with people who have issues, who are paying me to do their healing, when I am so concerned about myself.

AS: Do you tell your clients that you have acromegaly?

Shawn: It’s not at the forefront because I’m there for the clients. Sometimes I share that I have acromegaly, but I’m not real specific about it. Sharing my own journey seems to empower them, but I do so within limits because I am a professional.

AS: Do any of your clients have acromegaly?

Shawn: As far as I know, I have no clients who are acromegalic. I do tend to be more aware of issues around health though, including emotional, spiritual, and physical issues and challenges for a client. But for me it’s not a matter of being a victim. It’s not a matter of being passive. With my clients, it’s a role of being an advocate for themselves. It’s learning how to talk to the doctor, to encourage the client to talk to the doctor. I had to learn to be an advocate for myself. I will no longer take no. I will no longer put up with doctors who don’t care about me. So I try to help every one of my clients, particularly people with health issues, to be an advocate for themselves appropriately within the system.

I have seen that, if a person advocates for themselves in one area of their life, they often become more of an advocate in other areas of their life because many mental health issues such as anxiety or body dysmorphia or issues with depression tend to make us passive. If I can help a client move from a passive position of fear to a position of efficacy, a position of hope, a position of activity, then that helps to move forward in all areas of their life because now they’re no longer victimized by their life or by their circumstances. They’re no longer victimized by acromegaly. They become people who can actively, as best they can, participate in this world and live as fulfilled as they can be.

Linda: It’s connected. A lot of what I try to talk to people about is taking mental health away from the back dungeon someplace and realize it’s integrated into everything we do. The body is connected to the mind and the heart and vice versa. If we’re in a good emotional place, whatever we’re dealing with physically is likely to get better quicker. There are research studies to support that. And the other way as well.

AS: You’ve written about the connection between emotions and hormones, that hormones affect our emotions. Even when you look at the basic biology of the brain.

Linda: Many patients and their families are familiar with what’s called the HPA axis, the hypothalamic-pituitary-adrenal axis. And it was in relatively recent history that medicine recognized the pituitary is connected to the adrenals, is connected to the thyroid. It’s a system. And very close to the hypothalamus is what’s called the limbic area of the brain, which has a lot to do with emotions. Scientists have said that instead of calling it the HPA axis, we should call it the LHPA because it’s so interconnected and that emotional piece is so closely related.

There is no scientific evidence of a direct biological link at this point, but we know anecdotally that there are many people with pituitary disorders who also have an emotional component – depression, anxiety, cognitive difficulties, memory problems. There’s a host of things. We know adolescence is a time of hormonal changes and there are a lot of emotions involved in adolescence. We know pregnant women go through hormonal changes. We know females at a particular time of month have certain issues that come up emotionally, and we also know women who go through menopause sometimes will have a mental or emotional component to all of that. So just basic reasoning says that hormones have some connection with our emotional life and that it shouldn’t be that much of a mystery. Because we can’t clearly identify it yet doesn’t mean that we don’t acknowledge there’s a connection.

AS: So what do you suggest for your clients who are struggling with anxiety, depression, memory issues, and other problems?

Shawn: I try to help them move forward by being self-aware of how they feel, to be self-aware of their lifestyles, of how one area of life, psychological issues, can affect their body and their spirituality. Learning how to be self-aware of who and what they are as people, to see they have choices. To be able to recenter themselves with the use of mindfulness, such as short meditations and breathing exercises. To chop up large issues into smaller issues using compartmentalization or particularization so they can handle small problems at a time.

Linda: I often say that ten baby steps equals one big, giant step. The term successive approximation is used in psychology, not just for dealing with pituitary disorders, and it means you’re getting closer and closer to what the eventual goal is. We reach that little by little. It’s not about perfection; it’s about the pathway there. Maybe we’re never going to reach the perfection place, but we’re getting good along the way. The important thing is that you’re on the road. It doesn’t matter how slowly you get there, but it does matter to have some hope.

For a lot of patients it does feel hopeless, in part because they haven’t gotten to the right doctor or their meds haven’t gotten adjusted or they haven’t gotten the right treatment. They don’t know that there are companies out there and wonderful scientists who are working on new treatments all the time. And those are hopeful things. So we need to hold out that new pathways are being developed along the way. It’s important to know that.

Shawn: If I’m depressed, I don’t want to get out of bed but I might be able to get up and take a shower. I might be able to fix breakfast. Once I fix breakfast, I might be able to go outside and sit on the porch. Then I might be able to take my dog for a walk. The more success we have, the more proactive we become, the more able we are to manage our symptoms. Even if I have symptoms, I’m not a victim; I’m a person. I’m not acromegaly. I’m a therapist. I am what I choose to be. Existence precedes essence. I am not victimized by the life I live. Every success builds on success.

Linda: An important first step is coming to a place of acknowledging what you’re dealing with. And I know that’s easier said than done. Patients may feel there’s something wrong but until it’s actually confirmed it’s easy to doubt yourself. So looking inward and acknowledging there’s something off and that you know your own body – just trusting yourself. And that can be difficult when your hormones are playing with you, especially if other people are not trusting you and your own judgment.

Shawn: The place to find peace is not external, but internal. I need to be able to find peacefulness inside myself. I need to be able to look at what’s in front of me. What’s real. Not in my imagination of worrisomeness. To become active, to become proactive in the way I journey. By finding my own awareness and finding who I am, what I am by my choices in life, then I begin to find my voice, a place to be – by creating a place for myself and others.

Linda: You can do things like taking some time to be quiet, breathing, doing some yoga breath…there are specific trainings, there’s YouTube, all kinds of ways to learn these things, to quiet the body and the mind down, to allow there to be some peacefulness. And that’s a skill that is not easy. You don’t take one breath and then you’re good, but it is a wonderful practice. It’s just as important as physical exercise. By the way, whatever physical level you can attain is also good because, again, the mind and body work together. So if all you can do is walk to the mailbox every day and back, you can still feel good about the fact that you did it.

You also want to reinforce, pat yourself on the back emotionally to just say “I’ve accomplished something.” It may seem very small, but if done repeatedly and acknowledging your own strengths, looking at your life, what are the areas that are good. Because it’s real easy to see the bad stuff. Sometimes sitting down and putting  pen to paper and making a list of the things that are working, of the people in your life. We don’t need hundreds of Facebook fans. We need, and research supports this, two or three close, trusted people in our lives to be able to help ourselves get through difficult times.

AS: What else do acromegaly patients struggle with and what can they do about it?

Shawn: Clients often feel like they’ve lost their voice or that they’re not visible. That often accelerates their depression, anxiety, feelings of isolation or aloneness. So they look for a community. They look for a place. They’re looking for an identity. I find communities of faith can be helpful, if they’re healthy communities of faith, and to connect, for a place to belong.

Linda: There are support groups. There are conferences. You can meet other patients. That’s really powerful. And a relationship with a therapist can be a support. If a psychotherapist is open-minded to learn about you, learn about your illness, your specific symptoms, what your life is, what you’re dealing with, that person can be an emotional coach through the process and that can be a key person in your relationships in your life.

AS: How would you advise someone to find the right therapist?

Linda: There are ways to find a mental health professional who’s right for you. Organizations, that’s a good place to go. Find out if they belong to a professional organization or society. You want to look at their credentials obviously. Make sure they’re licensed. Ask “Have you ever heard of the pituitary?” You may get, “No, not really.” And that’s okay. So then you can say, “Are you willing to learn? Are you willing to listen? Are you willing to consult with somebody who might be able to direct you to reading material or to help understand what I’m dealing with?” You want to find out whether this mental health provider is going to be curious about you. That they’re going to see you as an individual and that they’ll be willing to understand that there is a physiological component, that there’s biology involved. And if they’re not willing to engage you in providing those answers, then go to somebody else. I always say there’s other people. Go down the list.

There is a subspecialty within family therapy called medical family therapist. It’s not a licensure, but it’s additional training. And you can Google that and sometimes find people who have worked alongside, usually primary care doctors in their training, but they have an awareness of the impact of the body on the mind.

Shawn: To be able to talk with somebody who actually listens is powerful, as opposed to giving them a worksheet and going over the endless amounts of irrational thoughts.

Linda: And it doesn’t mean you have to see that person forever or every week. It could be once a year, but you just feel like that’s a trusted person. Develop some goals and review them periodically. It shouldn’t be a forever thing and there should be some accountability. You have a right to require that. Sometimes your insurance company can assign a case manager who can help you. It’s worth a try.

Shawn: I have found in my practice, and personally also, that often there is grief when we have losses…a job, the things we used to be able to do. But those aren’t stages. Kübler-Ross’s use of those things was for dying people, not living people. There is some grief with the loss of normality, for me too. For many clients the grief process is there. They just haven’t been able to name it and claim it in the process of therapeutic work.

Linda: A lot of times, patients can stay stuck in looking at the past. I hear a lot of “I want my old life back. I just want to have it be the way it used to be.” And it’s very hard to say to someone, “You’re never going to be the same.” But maybe you shouldn’t. Because any life experience, especially one as big as all of this, does and maybe should change who you are. It can change you for the better if you allow it. You absolutely need to be able to grieve what you’ve lost. I hear from a lot of patients, “I lost five years or 10 years or 15 years of my life” or “I was 15 when all of this started” and they never had a real adolescence. They never really got to date. Maybe they never had children.

They can miss out on an awful lot of life, but that doesn’t mean the future can’t incorporate that loss and give them a sense of purpose and a different life. But it does take building and it does take courage and it takes some skills to be able to identify the  components you have left. You might be able to bring in some new components, but this is what you’ve got. And it can be a good life. I’ve met many people who have really wonderful lives, but they’ve had to make adjustments. They’re never going to be the same people. But that doesn’t mean it has to be bad.

AS: So, what do you do when you’re having a bad day? How do you help yourself?

Shawn: I try to let it pass through me. I try not to hold on to the pain or the disappointments or the frustrations. I come home. I’m with my family, my wife. We’ll watch TV or a movie, spend time, emotional intimacy. I will kill some things on the internet with video games. On occasion I’ll read some philosophical works or read a professional journal, trying to keep on the edge of the profession. I try to let go because letting go makes me stronger. In order to be stronger, I have to let go of the concept of strength. I become stronger by becoming more authentic, by living the life I can live as best I can, and not holding on to other people’s pain as I try to help them with theirs.

Linda: I think it’s important for patients to know that it’s not only about them, but they can have a positive impact on other people. Sometimes the most healing we can have is reaching out and connecting with somebody else, another patient, maybe through a Facebook page or going to a support group or just meeting somebody online. Being able to provide them with some guidance or just to be there to listen feels wonderful. if anything 2020-21 has taught us through the pandemic is how interconnected we are as a species worldwide. Not only in terms of bad stuff that can happen, but on solutions. On the development of vaccines, about ways to be healthy. It can feel good that we can share our solutions as well as our problems.

Shawn: Often in my work, clients can look back and see the effects of many negative situations, of trauma, of bad life choices. I can do this too…look at how that has created who I am today as I anticipate tomorrow. I try to help clients accept their past, as I try to accept my own. I try to look at myself realistically, to journey forward.

The past isn’t real. The future isn’t real. What is real is right now; the eternal now. But the past has effect on me, on my neurobiology, on my clients, and helping them to realize that, helping them to accept what’s real and helping them to gain the ability to make choices they want to make within the reasonable limitations of their situation. It isn’t just philosophizing. This is a strength-based, short-term therapy built upon a psychodynamic understanding of life. I become what I want to be by the choices I make within reasonable limitations.

AS: Let’s talk about some of the outward changes that can happen with acromegaly and how they can affect someone mentally. For some people, this aspect of the disease can bring another layer of challenges. Shawn you’ve used the words monster and beast when referring to yourself.

Shawn: Well, I have frontal bossing a little bit. It’s hard to see, but it wasn’t present 25 years ago. So even now, if I look in a mirror too long, I begin to notice the frontal bossing. I wonder, “Do other people see it? …even though I look at other people without acromegaly and they have a similar kind of structure across the bridge. That’s body dysmorphia, the over-focus on perceived flaws that may be hidden or otherwise not seen by others. So I have to turn it off as best I can, let it go through me as best I can. The more I’m aware of my own body, the more I focus on my body, the more I feel disconnected from other people, the more alienated and isolated I can feel. To the point where I feel so bad that all I think is what other people see is not me, but my disease. That’s a hard journey.

AS: Yes, frankly, it sounds incredibly hard. How do you navigate that journey?

Shawn: By staying aware that I have choices. Even though I am chronic with this beast, my life continues, and that to find meaning in it, to be aware that I don’t have to live in a trap of my own making, that I can do things as best I can with my symptoms. That isn’t just happy thoughts. My intent is not to dismiss the symptoms, but to deal with the symptoms and live the best life I can through awareness that I have some choices –– at least in most situations. Move forward, advocate, know, become aware, and do things as opposed to just looking at things. Spirituality is very important to me. It helps me settle the turmoil inside of myself. What is the meaning of this life? What is the meaning of this journey? It becomes a framework to understand, when healthy, where I belong.

And I advise others to know what’s available. hook in with communities, and find a mental health professional who can help.

Linda: Even with the best surgical and medical treatments, this is a lifelong pathway. But it doesn’t mean a person with acromegaly can’t still find ways to be productive, to be giving of the world.

AS: What would you say to someone who loves a person with acromegaly and wants to do something to help?

Linda: I think the first and best thing you can do is to be curious. And being curious means having patience and just being willing to ask a question about what it’s like. Can you tell me one little aspect of this? It doesn’t mean you have to sit there for hours and hours and listen to every part of somebody’s experience, but maybe one aspect of it.

There’s a tremendous amount of healing that occurs by somebody feeling like they really want to know. You’re not just saying this. You’re not just faking this, or you’re looking at your watch and saying, “When am I going to get through this time period?” But I really want to understand your individual experience. That’s tremendously healing.

Shawn: Talking with friends about my journey helps, but frame it in such a way that it doesn’t put me into a negative feeling situation. In other words, normalizing life because life can be as normal as it can be for me.

I try to frame conversations not as if I’m sick. I try to frame them as if I have a chronic illness, and I’m okay. I’m in love with my wife so I try to engage as best I can in that relationship…so, a place to be, someone to love, I try to engage with my boss where I work, and share that I might have to take time off, within reason. That I might need, on occasion, to talk to a therapist. He likes to know if I’m feeling down because it affects my ability.

Linda: The other thing that I think is really important is most family members feel bad and they would like to help, but they don’t know how. So they’re going to offer advice. Did you Google this, or did you hear that on Facebook or have you tried this herb or that diet? They’re absolutely well-meaning. But I would say ask the patient first, “Would you like me to offer you any guidance?” Or, “If I learn of something or if I read something, would you want that from me or not?” Ask permission and not presume that the patient is ready to or capable of taking in anything.

Because one of the things getting unsolicited advice does is it makes the patient think, I’m not doing enough, or I’m not enough. I haven’t managed this enough or I’m to blame for this, heaven forbid. I haven’t followed the doctor’s advice and I haven’t gone to the right doctors, or I’m not taking my medicine. Whatever it may be, they’re dealing with enough as it is. So asking permission and being willing to sit with somebody

Something else people can do is ask if they’d like some accompaniment to their major doctor appointments. Some of these appointments can be intimidating and very anxiety-producing. Particularly if you’re going to get a diagnosis or test results, or if you’re going to have surgery. A patient in the middle of listening to a doctor rattle off a lot of things about neurosurgery, you’re going to have surgery in your brain, that’s anxiety producing. So having a person there to take in all that information, they’re removed just a little bit so that you don’t have to worry about remembering it all because you won’t. And then that person is kind of like your advocate and also maybe helps you write down or come prepared to some of the doctor’s appointments with pre-prepared questions. Sometimes a family member can say, “Well, have you asked this or have you thought about that?” And they can have the question. And if you as the patient haven’t asked all those questions, then the advocate can be there to say, “Oh, remember you had this other question to ask the doctor.” “Oh yeah, okay.” And so they can be there to be your external brain as well. I think those can be very concrete steps to be helpful.

AS: What would you say to health care professionals who may encounter someone who comes to them with acromegaly?

Linda: That they don’t have to become therapists. They just need to ask a few extra questions, develop some good referral people in their local area who they can send people to and make that path a little easier, to bridge those two worlds and to de-stigmatize. Patients have a hard enough time dealing with their symptoms. They don’t need to have that extra stigma of, “Oh, there’s now a mental component to all of this.” It doesn’t mean you’re crazy. Let’s get rid of all that.

AS: Shawn, do you have any closing thoughts?

Shawn: I’ve started to notice two cultural trends that can get in the way of seeking out a therapist like me. One is the medicalization of symptoms. If I feel down, if I feel anxious, the answer is a pill. The first answer is not always a pill because taking a pill doesn’t take away the symptoms. It takes the edge off the symptoms so I don’t get worse.

The second thing is cultural responsibility. I am responsible for the outcome of my life. The implication of that is I need to be strong, and I am responsible for my symptoms. I can will my symptoms to go away with my own power of choice. Because of that, if I have symptoms, I have failed. I am weak, therefore I cannot seek out therapy. I just need to be more moral, more powerful, more potent, stronger so I can overcome my symptoms. Those delusions, overmedicalization and the extreme sense of responsibility, become obstacles, in my opinion, to seeking out mental health services that can help with medications or other medical professionals.

AS: Linda, how about you? What would you like readers to remember from all of this?

Linda: I’m a hopeful person. So I always believe that even with great challenges people can have productive and improved quality of life. And that’s really what we want is to have a quality of life where life is worth living. And that’s different for everybody. Everybody has to develop what that means for them.

When I am able to connect with somebody or help guide them in some way, it does feel a little bit like I’m changing the world – or at least in my own little area helping medical doctors, even endocrinologists, understand that this is not just a medical illness. That the mental health and the medical side, they blend together.

AS: Thank you both for sharing your perspectives and insights with us today.

We hope you found this honest conversation a source of guidance, inspiration, and empathy. Acromegaly and other diseases of the pituitary and/or endocrine system has yet to be fully recognized and understood by the public. But features like this can start to change the situation so that people with these disorders can access effective treatment, not only for their physical health, but also for their mental health.

We encourage you to investigate these resources for more information and to make more connections on your personal journey.

Acromegaly Community

Pituitary World News

Pituitary Network Association

World Alliance of Pituitary Organizations (WAPO)

National Organization for Rare Disorders (NORD)

Canadian Organization for Rare Disorders (CORD)

Eurordis (Rare Diseases Europe)

Rare Diseases: A Psychiatric Concern?

How rare diseases can impact mental health

Mindful.org