Becoming an AcroAlly for a person with acromegaly (PWA) can be a life-changing event, and many who find themselves in a support role are just trying to show up as best they can for the person they care about. Regardless of how you became an AcroAlly, you may experience compassion fatigue—a diminished capacity for empathy brought on by stress or being overwhelmed.

Before you resort to guilt, know this: no one is super-human, and “compassion burnout” is both normal and a signal that you need a break. Taking time for yourself is not selfish. If you don’t take care of yourself first, you cannot effectively support a PWA during their easy days and certainly not during the more difficult ones. In this post, we’ll explore some ways you can address compassion fatigue and how to gain perspective when you feel overwhelmed.

Practicing Self-care for Compassion Fatigue

There are many accessible ways you can deal with burnout. There’s no need to check into a fancy spa or book a ten-day vacation to recharge (although we would never dissuade you)! Find the relaxing things that help you recharge, whether it’s a walk with a friend or indulging in a favorite TV show. And of course, make sure you carve out time to do those things. Here are some examples of everyday self-care activities:

  • Stress reduction: Practice yoga, breathing exercises, meditation, or get a massage.
  • Constructive communication: Ask for help and accept it when it’s offered. For instance, you might talk to your employer and see if you can create a more flexible work schedule or stagger your hours on certain days of the week.
  • Schedule breaks: Put them on your calendar and make sure you and everyone else in your life respect the boundaries you’ve put in place.
  • Reach out to friends and family members: Ask others to assist with housekeeping, meal prep, gardening, and minor home repairs. Even kids can pitch in to walk the dog or pull weeds.
  • Find support resources: Talk to a healthcare professional about organizations devoted to specific diseases like acromegaly, rare diseases in general, caregiving/supporting, or related advocacy groups that you can participate in. (See the “Resources” list below.) Many of these organizations have insights into effective self-care techniques from direct experience.
  • Talk to people who share common experiences: Talking with people in the same caregiving boat can be therapeutic and lead you to resources you didn’t know about.
  • Maintain ties to your community: Whether you have a connection to a church, school, or neighborhood association, make sure you keep showing up and participating. And nurture your friendships with a night out (or in).
  • Seek professional counseling: An experienced therapist can help you explore ways to reduce stress and find balance.

Looking on the Bright Side

Even though being an AcroAlly brings challenges, wonderful things happen when you fully embrace this role. When you feel overwhelmed or burnt out, practice maintaining perspective; this shouldn’t replace self-care, but it can be an effective tool in your mental and emotional health toolkit.

Let’s look at several benefits of being an AcroAlly:

Being a valued part of the care team

The PWA interacts with doctors, nurses, physician assistants, study investigators, specialists, lab technicians, and more. Yet, YOU are the person the PWA sees the most often, talks to more than anyone else, and relies on the most. Without you, the whole support web could unravel.

Developing a deeper, richer relationship

Many personal and complex challenges often accompany a rare disease. And as an AcroAlly, you are likely experiencing many of those situations alongside the PWA in your life, making it nearly impossible not to become closer. A relationship like this can be an honor, a privilege, and a source of immense joy and gratification.

Feeling a sense of purpose

Even though many of us are tied to our jobs or overextended with obligations, none of these things may spark tha­t inner light that fuels a sense of purpose. But being an AcroAlly can provide that spark for you. It may even inspire you to become an activist or advocate on a larger scale.

Being an AcroAlly comes with little support or guidance yet no shortage of responsibility. As such, you can feel good about your ability to show up in all the ways you do, even if sometimes you need to step back and recharge. For more detailed tools, exercises, and resources to help AcroAllies like you show up in vital, positive ways in clinical trial participation and beyond, check out the full article, “Showing Up: Supporting Someone with Acromegaly.”

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