Eight years ago, I attended my first #MEAction caregiver support group meeting. I had no idea at the time how much that one meeting would change my life. After years of feeling alone as a caregiver, I finally felt seen, heard, and understood. I was used to being “the strong one” and the “problem solver.” But carrying so much of the emotional weight and responsibility of caring for my husband, who had become disabled by ME/CFS, could be incredibly lonely. None of my family or friends had even...

When chronic illness changes so much about daily life, it can change our relationships, too. Stress builds. Roles shift. Both people may be grieving what has been lost. And sometimes, without meaning to, we can start treating each other as the problem rather than remembering what we’re actually up against: the illness and the difficult circumstances it has created. Staying connected was one of the central themes of my recent conversation with NURA Community leader Lydia Fischer, “Being on...

By Erica Nybro It’s almost back-to-school time in many households, and this can be especially stressful for those supporting teens and young adults with chronic illness. In the 3 years since my now 19-year-old daughter was diagnosed with ME, POTS, and Ehlers-Danlos Syndrome, we have navigated several school scenarios: in-person public school, online public school, part-time community college, and now preparing to attend a 4-year university. Here are some of the lessons we’ve learned along...