20 Essential Self-care Practices for Rare Disease Caregivers: My Journey to Resilience

Being a caregiver for someone with a rare disease is an incredibly rewarding yet demanding role.

Learning how to advocate for my daughter gave me a sense of purpose and belonging. Actively living as a caregiver requires endless compassion, patience, and dedication. However, amidst the responsibilities of caring for a loved one, it's vital not to overlook your own well-being.

20 self-care practices for rare disease caregivers

As a caregiver, I have learned the importance of practicing self-care responsibly. From day one, I realized the only way I could parent fearlessly was to learn how to embrace resilience.

I'm digging deeply to share 20 valuable self-care practices that have helped me maintain my physical and emotional well-being while caring for someone with a rare disease.

1. Prioritize rest

Ensure you get enough sleep and take short breaks throughout the day to recharge your energy. Sometimes, I want to work around the clock to see everything I do to completion. Burnout doesn't look good on anyone, so make a list and check off what you can. It's okay to leave some tasks for tomorrow's list.

2. Seek support

Connect with other caregivers through support groups or online forums to share experiences and provide mutual encouragement. I love attending rare disease conferences because I can fully be myself, laugh, cry, smile, and observe. I understand that those around me completely understand what I face.

3. Establish boundaries

Set realistic limits on the care you can provide to prevent burnout and maintain a healthy work-life balance. No one person can do everything. Ask yourself daily, "Is there a better way to get this done?" There is an article that goes more in-depth on setting boundaries – check it out: Setting Boundaries: What Self-care Looks Like

4. Schedule "me time"

Dedicate time to activities you enjoy, whether it's reading, exercising, or pursuing hobbies that bring you joy. In the evening, my guilty pleasure is binge-watching series on Hulu, Disney Plus, or Netflix.

5. Stay active

Regular exercise improves your physical health and releases endorphins to boost your mood. Sometimes, my husband and I walk around the neighborhood together, or I exercise in the gym alone. My go-to gym machine is the elliptical.

6. Mindful breathing

Practice deep breathing exercises or meditation to manage stress and anxiety effectively. Sometimes, I have to pause, stop, and take a few deep breaths to combat the stress of constantly being busy.

7. Eat nutritiously

Maintain a balanced diet to support your immune system and overall health. I try not to buy unhealthy snacks because I will indulge if they are around. This article, Eating Healthy Without Breaking the Bank, explores practical ways to add more nutrition to your diet in an affordable way.

8. Ask for help

Don't hesitate to seek assistance from family or friends when you need a break or extra support. I haven't always had friends I could call when I am at my wit's end, but I do now. I've added them to my phone favorites for easy access.

9. Educate yourself

Stay informed about rare diseases, treatments, and available resources to support your loved one better. Rare Patient Voice is a go-to organization that helps patients and caregivers share their voices.

10. Practice gratitude

Focus on the positive aspects of your caregiving journey and be grateful for the moments of joy and connection. My Instagram account reminds me of advocacy highlights.

11. Connect with others

Maintain social connections outside of your caregiving role to prevent feelings of isolation. I still keep in touch with my close friends from high school. They help me remember who I am so that I can stay grounded on this journey.

12. Journaling

Write down your thoughts and feelings as a therapeutic outlet to cope with stress and emotions. It's no secret that writing is my anchor. I spill my heart on pages in my journal to look objectively at my circumstances.

13. Laugh often

Engage in activities that make you laugh, as laughter can be an excellent stress reliever. TikTok and Instagram reels, where people post voiceovers or memes, keep me laughing.

14. Set realistic goals

Break down your tasks into manageable steps to avoid feeling overwhelmed. I have reached the point in my life where I honestly have to write everything down.

15. Attend supportive therapy

Consider seeking professional therapy or counseling to process emotions and challenges. I prioritize counseling weekly.

16. Get fresh air

Spend time outdoors, even if it's just for a short walk, to boost your mood and clear your mind.

17. Practice mindfulness

Engage in activities that keep you present and in the moment, such as yoga or mindful walks. I use apps like Headspace: Mindful Meditation to alert me when I need to pause and relax.

18. Engage in self-reflection

Regularly evaluate your feelings and needs, adjusting your self-care routines accordingly. At the end of the day, I chat with my daughters to help me recharge and ensure that I listen to those who are important to me.

19. Limit negativity

Minimize exposure to negative influences or news that can impact your mental well-being. I no longer watch the news.

20. Celebrate small wins

Acknowledge and celebrate the achievements and progress, no matter how small they may seem. I try to celebrate as much as possible by writing down advocacy and personal wins.

Self-care is not selfish

As a rare disease caregiver, it's crucial to remember that self-care is not selfish; it is essential for your well-being and resilience. By incorporating these 20 self-care practices into my daily routine, I have learned how to better care for my loved ones while maintaining my own physical, emotional, and mental health.

Remember, your well-being matters just as much as that of your care recipient, and finding that balance will make you a stronger and more compassionate caregiver in the long run. Hang in there, and remember you are resilient!