How Do You Cope?
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?
Unfortunately I don't know how to cope with all that I am faced with daily. It seems like something new everyday. Everything that made me me is gone. I have horrific mom guilt that I sleep a lot and miss time with my daughter and if that isn't enough I have a mother who constantly puts me down and says I don't try to be better. Please if anyone can give me some advice on how to survive the second half of my life I would appreciate it! Please don't feel alone because I'm right there with you.
Hi
,
Thank you for sharing about your current reality. Having the responsibility of parenting while ill, and experiencing guilt over not being able to be as present as you would like to be for your dear child while also not having a supportive parent is a lot to carry. I applaud your courage to feel the feelings and your giving yourself the necessary loving care to reach out for help,
Have you tried searching for support groups of women experiencing similar feelings? I did a little googling just now and think I may have found a website that offers some resources that you might want to check out: https://www.thecenterforchronicillness.org/programs
Again, good job on reaching out. We are all stronger together.
Hugs,
Gina Miller, Team Member
Hi
, mom guilt is a topic that comes up a lot on one of our sister-sites. I wanted to share a couple of articles that I hope can help:
https://migraine.com/living-migraine/child-releases-guilt
https://migraine.com/blog/when-motherhood-becomes-reality
And as Gina suggested, please do check out the programs at the link she shared. You're not alone. We're here to listen and share support. - Warmly, Donna (Team 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 ! 🎶
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
I often focus on mindfulness and meditation. I try to journal frequently, but I’m terrible about being consistent with it.
thanks so much for sharing. Finding consistency can be hard. I used to journal much more, but then life got busier. Also, I think that I got frustrated by how slow I write compared to how fast I can type. I know some people who have started a digital journal and others who journal via voice memos instead. Maybe finding a different avenue will help? Wishing you a peaceful day, Jessica H (raredisease.net, team 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.Thank you for sharing these 5 things that we can do to be proactive in our care. For me, I have found that stress management seems to continually rise to the top of my list. With stress, I often find myself wasting both time and energy, making it harder to practice the rest. It felt good to be reminded that my time spent meditation and journaling is being well spent. Smiles and happy wishes,
Gina Miller,
RareDisease.net Team MemberThank you for sharing. Is there anything that would make it all easier to cope?
