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Personal Well-being

Living with a chronic, progressive disease can be overwhelming. Even if you are successfully managing your physical symptoms, you may struggle with feelings of uncertainty about the future, frustration with your physical condition, or stress over the changes in your life. Because Pompe disease is so rare, you may feel isolated or alone.

Everyone deals with these issues in different ways, but there are a variety of strategies and sources of support to help you maintain your personal well-being. Learning as much as you can, taking time for yourself, tapping into support resources, and reaching out to others for advice, comfort, wisdom, and understanding can help make your journey easier.

Taking Care of Yourself

Trying to balance the physical, mental, emotional, and social burdens of a disorder like Pompe disease can be stressful. The following strategies can help you reduce stress and put your energy into living as well as you can.

• Acknowledge your condition and give yourself permission to feel sad or angry
• Adjust your expectations and mindset—accept that your abilities may change from day to day, and put your energy into the things that matter most to you
• Take time for yourself when you can forget about your condition and just focus on things you enjoy, like hobbies or spending time with friends
• Learn as much as you can about Pompe disease, and continue to seek out new information so you’re aware of all your care options
• Prioritize your mental and emotional health equally with the physical, and seek professional help if you’re having problems
• Accept challenges associated with the disease and reach out to others when you need help—whether for practical assistance or social support

Building a Personal Network

Like many people with Pompe diseases, you may find that asking for help from others is a big mental hurdle. You might feel that you are giving up your independence or your control over your life. Ultimately, your physical condition will largely determine how much you need to depend on others. But you may find that what you gain from them outweighs what you give up.

Developing a personal support network is an important way to maintain your well-being as you deal with the disease’s everyday challenges and emotional pressures. Reach out widely and you’ll discover a variety of social support resources:

• Ask family, friends, and neighbors to help you with specific tasks, such as traveling to doctor appointments or dealing with chores at home—or just for company and someone to talk to
• Reach out to community groups and social service agencies who may be able to help with logistical matters or financial assistance
• Seek out other patients and their families to share both personal experiences and practical advice
• Join a support group to talk about your experiences and concerns in a gathering of like-minded people
• Contact patient organizations and advocacy groups to connect with others and learn about resources available to you

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