The holiday season is a time filled with festive gatherings, family traditions, and social expectations, but it can be challenging for individuals with a rare disease. Balancing the expectations of the season with the realities of managing a rare disease often involves both emotional and physical hurdles. As joyous as the holidays can be, they can also introduce feelings of isolation, frustration, or even grief. However, by prioritizing mental well-being, patients & caregivers can find ways to navigate the season with greater ease and peace.
Here are some strategies to help manage mental health during the holiday season.
1. Acknowledge Your Feelings
One of the first steps in maintaining mental health during the holiday season is to acknowledge and accept your emotions. It’s natural to experience a mix of emotions, especially if you’re dealing with the physical and emotional toll of a rare disease. The season can bring up feelings of grief for the life you once had or wish you could have, or feelings of frustration with the limitations your condition may impose. Allow yourself to feel these emotions without judgment, and try to identify and process them. Remember, it’s okay not to feel ‘merry and bright’ all the time.
2. Set Realistic Expectations
It can be tempting to want to participate in all the festivities or fulfill every family tradition. However, rare disease patients often need to be mindful of their energy and stamina, especially if they have treatments or symptoms to manage. Setting realistic expectations for yourself and others can be incredibly helpful. Prioritize the events or traditions that hold the most meaning to you, and communicate your limitations with your loved ones so they can support you. This might mean only attending part of a gathering or modifying your participation to fit your comfort level.
3. Plan for Self-Care
The holiday season can easily become overwhelming, so carve out intentional time for self-care. This could mean setting aside moments each day for activities that bring you comfort, whether that’s journaling, reading, or taking a relaxing bath. If you feel up to it, low-impact physical activities like yoga or walking can help boost mood and reduce stress. Creating a self-care routine that prioritizes your needs, even if it’s just for a few minutes each day, can make a significant difference in your mental well-being.
Some advice from a GIST Mentor:
– Rob Taylor
GIST Avocate & Mentor, Rob Taylor, shares his tips for keeping your joy and peace and balancing your mental health during the holidays as a rare disease patient.
4. Find Support in Your Community
Being a rare disease patient can feel isolating, but connecting with others who understand your challenges can provide a meaningful sense of support. Many rare disease organizations host virtual events or online support groups, especially around the holidays. Consider joining these events to share your experiences with others who truly understand what you’re going through. If you’re not comfortable sharing in a group, even a private message or text exchange with a friend or fellow patient can help foster connection and understanding.
5. Practice Boundaries with Others
The holiday season often comes with family dynamics and social obligations, which can be difficult to navigate. Family members or friends may have misconceptions about your condition or unintentionally make comments that feel dismissive. Practicing boundaries with loved ones is essential to protect your mental health. Be honest with others about what you can and cannot do, and don’t hesitate to redirect conversations if they’re uncomfortable. Having a few phrases prepared, like “I appreciate your concern, but I’m managing things in my own way,” can help you handle difficult interactions with grace.
6. Focus on the Present
Focusing on the present moment can be a powerful tool to reduce stress and anxiety. When thoughts of past holiday experiences or worries about the future start to surface, try grounding techniques like deep breathing or guided meditation. Mindfulness practices can help shift your focus from what’s missing or what could go wrong, to what’s happening in the present moment. This approach encourages gratitude for the small things you can enjoy during the holiday season, such as a favorite meal, a heartfelt conversation, or a beautiful holiday decoration.
7. Reach Out for Professional Help If Needed
It’s important to remember that seeking help from a mental health professional is a sign of strength, not weakness. The holiday season can amplify emotions, and if you find yourself struggling with feelings of sadness, anxiety, or hopelessness, reaching out to a counselor or therapist can provide support and coping strategies. Many mental health professionals are familiar with the unique challenges of chronic illness and rare diseases and can offer specialized advice for managing the season.
8. Embracing the Season at Your Own Pace
The holiday season may bring challenges, but by prioritizing your mental health, you can create a more peaceful experience. The key is to honor your needs, set boundaries, and seek support when you need it. Remember, the season doesn’t have to look a certain way for you to find moments of joy and connection. Celebrate the holidays at your own pace, finding comfort in the things that bring you peace and fulfillment. By focusing on what matters most, you can navigate the season with resilience and hope, even as a rare disease patient.
