Acromegaly Patient Stories: How to Tell Yours Openly, Genuinely, and Effectively
You’re at a cocktail party and just as you’re about to pop another mushroom puff in your mouth, an acquaintance comes up and says, “Joe told me you have something called acromegaly. What’s that about?”
Or you’re waiting in the exam room when the doctor walks in and says, “So, what brings you in today?”
Or you’re meeting with your fourth-grader’s teacher, who asks you if there’s anything going on at home that might be affecting your child’s grades.
These situations are admittedly hypothetical, but chances are, as a person with acromegaly, you’ve been in a position where you have to tell somebody some version of your acromegaly story. In the moment, it can be challenging to know exactly what to say and how to say it. Someone opens the door, and a million questions pop into your mind as to how you should walk through it.
How much do I want to share with this person?
How much does this person really need to know?
In what way(s) will telling him/her my story help me or my family?
How can I do this in an authentic way that feels right to me?
One of the biggest challenges is the simple truth that telling your acromegaly story can bring up a lot of emotions at a time when you want to be clear, concise, and understandable. The way your symptoms impact your life, the time it may have taken to get an accurate diagnosis, the treatments you’ve undergone and may still be following – these aspects of living with acromegaly can trigger a host of emotions that run the gamut from frustration or anger to courage or pride. These can get in the way of communicating the way you’d like.
To help you think through these questions and arrive at answers that work best for you, this piece offers guidance, tips, and best practices on how to tell your acromegaly story. No one can write your story for you, but hopefully you’ll discover some techniques and tools here that help you craft it so that next time the door swings open you can walk through it with the kind of self-awareness and confidence that ensures you are heard and empowers you to better advocate for yourself.
“Telling your story in all forms, whether spoken as a mentor, written online, or communicated to a friend, can be a strong tool for healing and can help you make sense of some of the conflicting feelings you might have about your disease.”
Ilana Jacqueline
Author, Surviving and Thriving with an Invisible Chronic Illness
Why tell your acromegaly patient story in the first place?
Before we dive into how to tell your story effectively, here’s something to think about: Why tell it at all? Just because someone asks you about your acromegaly doesn’t mean you’re obligated to fill them in. But there are good reasons you may choose to do so.
It connects you to others. From cave walls to campfires to the latest $200 million superhero movie, storytelling is an ancient and basic human behavior. It’s how we communicate “This is what this shared experience of living in the world is like for me.” Telling your own story can build a bridge of understanding to others who don’t realize what you’re going through or who don’t know what to say.
It’s therapeutic. Sharing your story can be a cathartic experience that leads to feelings of relief and helps calm anxiety because you’re creating a coherent narrative out of something that may feel messy, or at least not completely identified or defined. There’s a reason people say, “It feels good to get that off my chest.” You may even feel a kind of spiritual uplifting that brings benefits beyond the physical.
It gives you power. By sharing your lived experience on your own terms, you take control of the narrative. You own it. The when, where, why, and how of telling your story are all determined by one person: You.
It can help raise awareness. Having a rare disease is challenging on many levels, not the least of which is the lack of awareness – sometimes even in the medical community. The more you share your acromegaly patient story, the more awareness you create. In your own way, you are contributing to the greater good of increasing acromegaly’s profile in the world and may even inspire advocacy.
It can be inspirational. Never forget the experience you give others when telling your story. We’ve all been moved by a film, a book, a play – these stories had an emotional effect on us. Yours can do the same. Hearing your story may inspire someone else who is struggling – with acromegaly or something else – to open up, reach out for help, or simply make their own connections.
Acromegaly Patient Story as Elevator Pitch
You’ve probably heard of an “elevator pitch.” It’s a short “story” that gets your point across to someone quickly – in about the time it takes for an elevator to get from an upper floor to a lobby.
There are several reasons to have one in your mental back pocket, ready to be called up whenever you need it. When crafted well, an elevator pitch is:
- Efficient: It gets the job done in the short amount of time you have
- Succinct: It cuts out ambiguity and emphasizes the key things a listener needs to know
- Understandable: It presents information in a natural, comprehensible way
When it comes to acromegaly and your story, what you choose to include or omit will likely vary depending on who you’re talking to (more on this later). In general, though, you want the listener to:
- Understand your diagnosis
- Learn your symptoms and the challenges they present
- Know the treatment you’re currently following
- Have a clear picture of what, if anything, you’re asking of them now
A structure for your story
Acromegaly is such a rare disease, few people have even heard of it let alone understand it. You’re about to give them a bunch of new information in a short period of time, which can be overwhelming. To help your listeners get the message, it can be helpful to construct your story using a general outline, then fill it in with any necessary details.
The goal is to have one segment naturally lead to the next, so people will follow you. An easy way to do this is to take a chronological approach that hits on the major “story” points.
Here’s a proposed outline you can use as a first step in putting your story together. You may find that not all of these elements play a part in your story, which is fine. Just skip over anything that doesn’t feel right for you and move to the next item. Don’t censor yourself at this point. The goal is to get all your thoughts down and look at the result as a whole. The editing comes later.
Story Point 1: What acromegaly is
You want people to understand the diagnosis and have context. What causes acromegaly? What happens in your body? Provide as much medical detail as you’re comfortable sharing.
Example:
I have a rare endocrine disease called acromegaly. It’s caused by a benign tumor on the pituitary gland that secretes excess growth hormone. There are only about 3,000 new cases a year.
Story Point 2: Your symptoms
If your symptoms are important for your listener to know, you may feel it appropriate to touch on them. No need to delve into great detail if you’re not comfortable doing so, but you could give a light sketch of what you’re dealing with physically if you want. What physical changes did you notice? Any nonvisible symptoms you had to deal with? How intense was all of this?
Example:
The symptoms vary. With me, I have larger hands and feet and a bit of a pronounced jawline from the excess growth hormone. I get headaches a lot too, and I have to be careful not to overcommit to things because I get fatigued quickly.
Story Point 3: The path to diagnosis
You may find that this is where a lot of emotions come up, given the average time to get an acromegaly diagnosis is nearly five years. You could explain that many symptoms of acromegaly such as headaches, fatigue, or vision problems can look like symptoms of other, unrelated diseases or conditions. Mention that they generally develop gradually over months or even years, so patients and doctors don’t always notice them right away. Couple this with the fact that awareness of acromegaly is quite low, even among doctors. Sharing this part of your story can help raise awareness, even among doctors, nurses, and other healthcare practitioners, so that acromegaly isn’t so obscure and the time to diagnosis gets reduced. How many doctors did you see? What kind of doctors were they? How long did it take for you to get a diagnosis? How did you find the doctor who ultimately diagnosed you correctly?
Example:
I went to all kinds of doctors…foot doctor, internal medicine, an ENT for the headaches. No one could tell me what was going on. After about 15 years, I was referred to an endocrinologist and got diagnosed. Which isn’t all that unusual since it’s so rare.
Story Point 4: How all of this affected you at the time
This part of your story is where the rubber meets the road – where you might tell your listener how living with your chronic disease felt. Did your life change? If so, how? How did it affect your job? Your social life? Your family life? Convey the reality of it all.
Example:
It was so frustrating. Sometimes I’d laugh about it; other times I’d cry. I was too tired to play with my kids more than ten minutes. I didn’t want to go out with my friends. It was really affecting my life.
Story Point 5: Treatment once diagnosed and its outcome
This is to let people know what can be done for the disease, and the steps you took. Did you have surgery? Do you take medicine? What kind? How often? How effective have these treatments been?
Example:
When they first discovered it, I had surgery to remove the tumor. Now I get a monthly injection to help control my growth hormone levels, and I find that acupuncture helps my headaches. My levels stay pretty much within normal range these days, but the shots are painful. Some of the overgrowth has gone down since I’ve been controlled and luckily my energy level is better.
Story Point 6: How you cope today
Let people know that acromegaly is a chronic condition that you live with every day. How do your symptoms today compare with those before your diagnosis? Where do you get support? How do you take care of yourself?
Example:
So, I take it one day at a time, like everyone else, I guess. Some days are better than others. But I swim and I watch what I eat so that helps. And I’ve met some great people in online support sites. I just started meditating and that seems to help too.
Story Point 7: What others should understand about living with acromegaly
Here’s where you can advocate for yourself. What, if anything, do you need from your listener? If you had to boil it all down to one simple takeaway for them, what would it be?
Example:
I’d just ask that you have a little patience with me. My doctor visits take a big chunk out of the day every month, and I have to lie down for an hour or two most afternoons so I can’t always answer calls and emails right away. Just know I’m not ignoring you.
Story Point 8: Positive ways that living with acromegaly has influenced your life
It’s always nice to end a story on an upbeat note, so if you can do so then give it a try. Of course, you want to stay genuine. No need to make up a fairy tale ending. But if you’re able to give people a sense of hope or positivity, it makes them more empathetic and more receptive to what you’re saying.
Example:
It’s been a long road, and not something I planned on having to deal with, but it is what it is. I’ve found support online in places like Acromegaly Community, where I’ve met other people who have this condition so I don’t feel like I’m the only one. Going through all this has definitely made me more apt to speak my mind and not take any guff from people. That can be a real asset at the car dealership.
Putting it all together
Now that we’ve gotten our thoughts down for all the main story points, let’s put it all together and see what we’ve got. Our example weighs in at 400 words. Read it through and see how it flows.
I have a rare endocrine disease called acromegaly. It’s caused by a benign tumor on the pituitary gland that secretes excess growth hormone. There are only about 3,000 new cases a year.
The symptoms vary. With me, I have larger hands and feet and a bit of a pronounced jawline from the excess growth hormone. I get headaches a lot too, and I have to be careful not to overcommit to things because I get fatigued quickly.
I went to all kinds of doctors…foot doctor, internal medicine, an ENT for the headaches. No one could tell me what was going on. After about 15 years, I was referred to an endocrinologist and got diagnosed. Which isn’t all that unusual since it’s so rare.
It was so frustrating. Sometimes I’d laugh about it; other times I’d cry. I was too tired to play with my kids more than ten minutes. I didn’t want to go out with my friends. It was really affecting my life.
When they first discovered it, I had surgery to remove the tumor. Now I get a monthly injection to help control my growth hormone levels, and I find that acupuncture helps my headaches. My levels stay pretty much within normal range these days, but the shots are painful. Some of the overgrowth has gone down since I’ve been controlled and luckily my energy level is better, for the most part.
So I take it one day at a time, like everyone else I guess. Some days are better than others. But I swim and I watch what I eat so that helps. And I’ve met some great people in online support sites. I just started meditating and that seems to help too.
I’d just ask that you have a little patience with me. My doctor visits take a big chunk out of the day every month, and I have to lie down for an hour or two most afternoons so I can’t always answer calls and emails right away. Just know I’m not ignoring you.
It’s been a long road, and not something I planned on having to deal with, but it is what it is. I’ve found support online in places like Acromegaly Community. Going through all this has definitely made me more apt to speak my mind and not take any guff from people. That can be a real asset at the car dealership.
Our example flows pretty well, but it’s on the long side. Time to make some edits.
Trimming the fat from your story
You may have heard that old saying, “I would have written a shorter letter but I didn’t have time.” It’s a great way of conveying the simple truth that it takes time to craft a story well, trim off the excess words and filler phrases, and to make it all flow seamlessly.
As you start the editing process, keep asking if every sentence is working hard for you. Here are some guidelines:
- Just say things once. Delete repetitions and redundancies.
- Use everyday language or, as some people say, avoid 25¢ words when a 5¢ word will do.
- Remember, you’ll be telling your story to people. It’s not an academic paper.
- You are in the driver’s seat. Share what you’re comfortable sharing. Leave out the rest.
- Use active verbs and avoid the passive ones (is, are, was, were)
- Less is more.
- Stick to the point.
- Balance facts and emotion. The best stories have both.
Here’s an edited version of our example. By stringing some thoughts together, leaving a few things out that felt less important, and polishing some phrases, we’ve gotten it down to about 225 words. Take a read.
I have a rare disease called acromegaly, which is caused by a benign tumor on the pituitary gland that secretes excess growth hormone. That’s why I have larger hands and feet and a bit of a pronounced jawline. It’s so rare, it took the doctors about 15 years to diagnose it, which was really frustrating. I was fatigued, got lots of headaches, didn’t want to do much of anything. Just tough, you know?
So I had surgery to remove the tumor and now I get a shot every month to control the hormone levels and they stay pretty normal. But the shots hurt like hell and I still get headaches and some fatigue. Some days are better than others. Acupuncture and exercise help. I meditate some, and I watch my diet.
A big plus has been the friends I’ve made through support groups but what’s challenging is all doctor visits every month and taking breaks in the middle of the day so I don’t overdo it. So if I don’t return calls or emails right away, I’m not ignoring you. I just ask that you’re patient with me.
It’s definitely a challenge having this, but I’ve made adjustments. And it’s definitely made me more apt to speak my mind and not take any guff from people. That can be a real asset at the car dealership.
Tweaking your story
Once you have your basic elevator pitch done, you may want to tweak it for any number of reasons: The situation at hand, why you’re telling it, how you’re feeling that day, how much time you have, and most importantly who you’re talking to.
You may find that having two or three versions of your acromegaly patient story works better than just having one. Consider the list of people you may someday share your story with, and arrange them in groups according to the degree of detail you offer them.
There’s no right or wrong way to do this, but here’s one way to go about it. Your groups may look different.
Group 1: A little goes a long way
These are folks who only need to know the big picture and who aren’t really in your inner circle.
- Neighbors
- Acquaintances
- Boss
- Co-workers
- Professional colleagues
Here’s our example story again, tweaked for this group to be 100 words:
I have a rare disease called acromegaly, which is caused by a benign tumor on the pituitary gland that secretes excess growth hormone. That’s why I have larger hands and feet and a bit of a pronounced jawline. I had surgery to remove the tumor and now I get a shot every month to control the hormone levels and they stay pretty normal. I still get headaches and fatigue, and some days are better than others. So if I don’t return calls or emails right away, I’m not ignoring you. I just ask that you’re patient with me.
Group 2: A bit more detail
They’re not strangers, but they’re not confidantes. These people often fall somewhere in the middle of the two.
- Extended family
- Casual friends
- Social media (depending to what degree you’re comfortable sharing publicly)
- Legislators, regulators (if you decide to work in advocacy)
- Drug trial investigators
- Pharmacists
Here’s our example story, tweaked for this group and weighing in at 140 words:
I have a rare disease called acromegaly, which is caused by a benign tumor on the pituitary gland that secretes excess growth hormone. That’s why I have larger hands and feet and a bit of a pronounced jawline. It took the doctors about 15 years to diagnose it, which was really frustrating.
I had surgery to remove the tumor and now I get a shot every month to control the hormone levels. They hurt like hell and I still get headaches and fatigue; some days are better than others. So if I don’t return calls or emails right away, I’m not ignoring you. I just ask you to be patient. It’s definitely a challenge, but I’ve made adjustments. I speak my mind and I don’t take any guff from people. That can be a real asset at the car dealership.
Group 3: No holding back
Reserved for the people you’re closest to and who you need/want to confide in.
- Spouse or partner
- Children
- Therapist
- Close friends
- Others with acromegaly
- Fellow members of support communities or patient organizations
- Doctors and health care practitioners
For this group, you could use the edited version from “Trimming the fat from your story” above, as is. Or expand it a bit by adding in a few of the details you previously took out. Obviously, it’s going to depend on who you’re talking to and what you want to share.
Practicing your story
It may sound silly to even suggest this, but practicing your story can really help you polish it so that you tell it more effectively and really draw your listeners in. And isn’t that the point of telling it to begin with?
There are several ways you can practice, depending on your personal comfort level. But pushing through “stage fright” at this point can only help you when you’re out in the “real world” in front of an actual audience – even if it’s an audience of one.
One idea is to practice in front of a mirror. Listen to how your words sound; your cadence, your vocabulary, your volume. You can time yourself so you’re not taking a long time to get the words out and potentially overtaxing listeners. If standing in front of a mirror makes you feel awkward, use your smart phone to make a video in whatever setting feels natural to you. Or make an audio-only recording and listen back to it. Consider sharing your recording with friends within the acromegaly patient community for feedback. Whether you go with audio or video, it can be fun to keep your first attempt and compare it to your polished version once you get to that point.
You can also practice telling your story to family and friends. Ask for constructive feedback and make adjustments as necessary.
It’s Showtime! Telling your acromegaly patient story
When you feel ready, the next step is to walk the walk by talking the talk. Remember that you don’t have to memorize your story word for word. It’s your own personal story, not Hamlet. Besides, no one is going to know if you forget a part or hold you accountable for saying things out of order. All you really have to think about is your desire to inform people, paint a picture for them of what acromegaly has been and is like for you, and raise their overall awareness. So just be authentic and you’ll find that the words will flow much easier than if you try to memorize anything.
After you tell your story, do a little self check-in. How did it feel in the telling? Did you feel authentic? Honest? Comfortable? Did your listeners seem engaged? What did their body language tell you? “Reading the room” is important and you want to avoid glazed eyes.
What about verbal cues of how your story went over? Did your listener(s) want to know more? Did they ask follow-up questions? These may indicate that your story needs to be adjusted for clarity or completeness. You can do this quick check-in after every time you tell your story, or just every once in a while; it’s about what’s most helpful for you.
Most likely, telling your personal acromegaly story is something you’ve been called on to do many times. And it isn’t always easy. But by approaching it as outlined here, you can hopefully be prepared to tell it with a bit of polish to your words, some kindness in your heart, and a purpose that inspires. Told well, your story can open eyes, minds, and hearts every time you tell it. Here’s hoping it does exactly that.
HELPFUL TOOLS AND RESOURCES
Chapter 3 of Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms by Ilana Jacqueline offers exercises to get the storytelling juices flowing, further tips on crafting your story, and a great example of the author’s own elevator pitch.
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.