CommunityMember8908624
Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a difference?
CommunityMemberc26ac4 Member
Connecting with someone who understands what I'm going through.
Gina Miller Moderator & Contributor
Hi
I also had this challenge when I was first diagnosed with MAC Lung Disease, and then again when I learned I have cystic fibrosis. it felt very lonely to be going through these illnesses 'on my own.' Thankfully, I found online support groups of other patients for both, but I know that not all rare diseases have specific support groups.
Have you searched the name of your disease and the words support group?
Gina Miller,
Team Member
Tatiana Corbitt Contributor
Benjamin McLean Member
Navigating this journey often means facing challenges like finding reliable support and managing stress.
Connecting with support groups, therapists and loved ones can make a huge difference.
Donna.Flood-Amaya Community Admin
Tatiana Corbitt Contributor
Katt31 Member
As a person with rare non curable disease I have a lot of bad days .. I cope in these days with self care.. shower and just let water run as hot as I can take on those days, spiritual meditation, sleep in dark quiet room
Gina Miller Moderator & Contributor
I agree... we must allow the grieving to pass through and then find renewed joys in life. I love what you said about ;moving forward.' We rare disease warriors definitely have to become creative at times to meet our needs, and to keep forward motion in our lives.
Hope you are having a sweet beginning to your week,
Gina
Team Member
Tatiana Corbitt Contributor
Benjamin McLean Member
Navigating life's journey involves facing challenges and seeking support. Many find understanding and guidance in communities, therapy and trusted relationships. Support that listens and empathizes often makes the biggest difference.
Gina Miller Moderator & Contributor
Thanks, again, Benjamin. Hope you're having a good day!
Gina (Team Member)
Tatiana Corbitt Contributor