Pompe disease can affect mental and physical well-being

People living with Pompe disease may go through an emotional journey that begins with early symptoms and continues through diagnosis, treatment, and changes in physical health. Feelings like worry, stress, and fear can take a toll on both patients and those who care for them.

When those emotions get in the way of someone’s day-to-day life and overall well-being, doctors may recommend adding a psychologist or other counselors to the care team.

How talk therapy can help

Psychologists and mental health counselors can help people work through feelings such as sadness, worry, or stress.
Over time, they provide tools and support to help individuals feel more in control and improve their well-being.

Diagnosis

First, the psychologist or counselor might ask some questions, write down information, and do some tests. This helps them understand how someone thinks, feels, and acts. With this information, the therapist can decide how to help someone better.

Talk therapy

As the name suggests, this type of therapy involves talking with an expert to help people:

Understand their thoughts, feelings, and actions
Figure out what parts of these problems can be fixed
Feel more in control or find happiness in life again

Caregivers need care, too

Caring for someone with Pompe disease can be rewarding, but it can also be overwhelming and take a lot

of energy and time. If caregivers don’t take breaks, the stress can take a toll on their mental and physical
health.

Know the signs of burnout:

Caregivers might be going through “caregiver stress syndrome” if they have any of the following common signs:

Feeling sad or worried
Getting mad at the person they’re caring for
Not wanting to spend time with friends or do fun things
Feeling tired and not wanting to do things
Having trouble sleeping
Finding it hard to focus on things
Getting sick more than before
Doing things that are not good for their health

Don’t ignore the problem:

Accepting and talking about these feelings is a healthy step towards managing caregiver burnout. Here’s what else can be done:

Take short breaks: Get help from local agencies, family, or support groups. They can assist caregivers in taking a break to relax.
Take care of personal health: Doctors and medical professionals should be aware of the caregiver’s needs and be ready to help.
Get help with tasks: Ask family or local services for assistance with transportation, meals, cleaning, or other chores.

How to prevent caregiver burnout:

Eating well, drinking water, and taking time to exercise can help caregivers avoid burnout by focusing on their personal health. Here are some other ways to help:

Learn more about Pompe disease and how to manage it
Share feelings with a friend
Join a support group
Ask for help and accept it when offered
Talk to a therapist or counselor

Find Pompe disease support groups.