Caregiver Self-care

Self-care: Critical for Carers

Being a caregiver (or what we often call a care partner, or “sharegiver”) to a loved one with FSHD is an important responsibility that can be both rewarding and challenging. To care for others effectively, you must make sure to first take care of yourself—and that’s where self-care comes in.

Self-care is essential for your well-being. It’s about finding balance and moments to recharge. This ensures you can provide the support your loved one needs while maintaining your own health and peace of mind. Whether it’s setting boundaries, seeking support, or simply taking time for yourself, every step you take toward self-care is important. These actions benefit both you and the person you care for.

Join Our Care Partner Hour for Support & Connection

We understand caregiving can feel isolating, so we’ve created a safe, supportive space for you. Our Care Partner Group offers monthly meetings on the final Tuesday of each month at 8:00 pm ET/ 5:00 pm PT to share experiences, discuss challenges, and exchange tips. Connect with others who truly understand and gain insights to make your journey easier.

Each month, we explore different topics, from stress management to navigating the healthcare system and more. Share your experiences in a confidential, judgment-free space and receive emotional support and advice from others who understand. Join us at our next meeting and take the next step in prioritizing your well-being. You’re not alone on this journey.

Join the Group See the Full Schedule of Events

Additional Resources

Click the links below to find additional resources on caring. This topic goes far beyond FSHD!

National Institute of Health (NIH) UCSF Health Mayo Clinic

Self-care Tips

Caring for someone with FSHD is an act of love, but it can also be physically and emotionally draining. It’s okay to feel tired, frustrated, sad, or even overwhelmed at times. You are human, and your feelings matter. Taking care of yourself is just as important as taking care of your loved one. Here are three simple ways to practice self-care:

1. Take Breaks Without Guilt

It’s okay to step away and recharge. Even a short break can help you feel refreshed and less stressed. Try:

  • Taking a short walk outside
  • Listening to your favorite music or podcast
  • Enjoying a quiet moment with a book or a cup of tea

Taking time for yourself doesn’t mean you’re neglecting your loved one. It means you’re making sure you have the energy to keep being there for them.

2. Stay Connected with Others

Caregiving can sometimes feel lonely, but you don’t have to go through it alone. Reach out to:

  • Family and friends who can listen and support you
  • The Care Partner Hour
  • A therapist or counselor if you’re feeling overwhelmed

Talking to others who understand can help lighten the emotional load and remind you that you are not alone on this journey.

3. Care for Your Own Health

It’s easy to focus so much on your loved one’s needs that you forget about your own. Your body and mind need care, too. Make sure you:

  • Eat healthy meals and stay hydrated
  • Get enough sleep
  • Move your body in ways that feel good (like stretching or light exercise)

If you’re feeling run down or sick, don’t ignore it. Your well-being matters and taking care of yourself helps you be the best care partner you can be.

Remember: You are doing an incredible job, even on the hard days. It’s okay to ask for help. It’s okay to feel a mix of emotions. And most importantly, it’s okay to take care of you.