kelly-miller
Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?
CommunityMember7008546 Member
I journal to get all my feelings and frustration out.
I also love music and since I'm a San Antonio Blues Society member I volunteer for our monthly Blues Jam. It's a joy and great stress relief to have an afternoon with great musician friends and awesome music while also enjoying being outside with fresh air and sunshine ! 🎶
Gina Miller Moderator & Contributor
Thank you for sharing. Journaling helps me, too, as it is something that can be done in so any ways. I sometimes write encouraging messages to myself or even just lists of things I have gotten past...also affirmations and gratitude lists go into my journal. I used to throw out journals, out of shame, but now give myself a lot of compassion, and even inner applause for my honestly with myself.
The Jazz group sounds super!! I lived in San Antonio for 9 years along my way and know how nice Springtime can be there! ENJOY!
Smiles,
Gina Miller
RareDisease.net Team Member
Omis Member
I often focus on mindfulness and meditation. I try to journal frequently, but I’m terrible about being consistent with it.
Jessica Hanson Moderator & Contributor
ayassresearch Member
Certainly, here are five concise tips for coping with a rare disease:
Consult a specialist for tailored care and guidance.
Join support groups to connect with others facing similar challenges.
Maintain a health journal to track symptoms and treatments.
Practice stress management techniques for emotional well-being.
Stay informed about your condition and available resources for assistance.
Gina Miller Moderator & Contributor
Smiles and happy wishes,
Gina Miller,
RareDisease.net Team Member
CommunityMember8908624 Member
Thank you for sharing. Is there anything that would make it all easier to cope?
Serenats Member
Love this