If someone in your life has been diagnosed with acromegaly, you know that such a rare, chronic disease affects not only the person with the illness but the people in their life as well. Of course, the person with acromegaly (PWA) is on their own unique and demanding journey. Yet as someone in their support network, you may be facing your own challenges. AcroAllies,[1] as we’ll refer to people who support PWAs, can be family members, friends, spouses, or coworkers, and may not be prepared to step into this kind of support role. There is little guidance on what to do or how to do it.
So as an an AcroAlly supporting a PWA, how can you best offer your support? What might your role entail? The answers to those questions are as unique and varied as the PWAs. In this blog, we’ll explore the terms you may use to describe your role and look at some typical responsibilities of AcroAllies. We’ll also share a few activities to kick off conversations with the PWA in your life about how you show up for them.
Let’s talk labels
The words we attach to ourselves matter. They shape how we see ourselves, how we offer support to others, and how others view us. And there are many terms you can use to refer to your support role in the life of a PWA. Depending on the day, you may feel you identify with one term over another or even multiple terms. Examples of words you might use to describe yourself could be helper, mate, caregiver, acrobuddy, advocate, or anchor.
Of course, none of these terms describes everything you do, and it’s possible none of them feel right to you. But that’s okay. No one word can encompass everything you do and are for a PWA. Ultimately, what matters is that you find a label that feels right to you and the PWA in your life, setting the tone and expectations for how you turn up for yourself and them. For more, check out our downloadable exercise at the end of this post to learn how you and the PWA label your role.
What does an AcroAlly do?
Perhaps you don’t consider your support role as anything more than being a good friend or a helpful loved one, but you’re so much more than that. As an AcroAlly, what you do for your PWA can extend from the practical tasks that need doing to offering emotional support. And what that looks like can differ based on an array of variables, including how their needs will evolve along their acromegaly journey. Let’s look at some examples of different kinds of support an AcroAlly can offer:
- Pitch in on housework and meal prep
- Be a sounding board
- Provide transportation to and from appointments
- Spend quality time together
- Administer medications and injections and help with insurance claims
- Educate healthcare professionals on a PWA’s disease and condition
- Become a researcher, acromegaly expert, PWA advocate, or even a teacher (for more on researching, specifically for clinical trial participation, check out our blog post, “The AcroAlly’s Role in Clinical Trial Participation.”)
- Coordinate daily health care needs, such as figuring out dosing schedules and coordinating care for comorbidities of acromegaly
As you can see, these tasks are diverse, which is why in our label discussion, we didn’t use terms such as chauffeur, baker, or dry-cleaning picker-upper, even though those tasks are a massive help to the PWA in your life. Those kinds of terms are limited in how they describe what you do and can affect how you view yourself. Whether you found yourself in this role by default, or it was a conscious choice, chances are the contributions you make to your PWA’s life are invaluable.
If you’re interested in exploring how you and the PWA in your life view your role and the kinds of tasks you do, check out our “It Takes a Village” exercise.
For more detailed tools, exercises, and resources to help AcroAllies like you show up in vital, positive ways for the PWA, check out the full article, “Showing Up: Supporting Someone with Acromegaly.”
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[1] For clarity and simplicity, we’ll call the person or people who play a support role in a PWA’s life an AcroAlly or AcroAllies, while acknowledging that you may use other terms.
