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.
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?
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?
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.
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?
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?
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?
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.
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.