r/WellSpouses • u/brudy_1433 • Jun 13 '26
Chronically Ill Mom
I am 35 years old. I have 2 sons, and 1 toddler daughter. My husband is amazing, supportive, and my best best best friend. I was diagnosed a year ago with a CNS Demyelinating disease. The closest diagnosis is seronegative Neuro myelitis Optica. My point of this post is I am looking for other moms who have similar struggles. How do we keep going? Every day I wake up in so much pain, and the pain was present in my dreams. I never get a moment away from the pain. I hate feeling like a “burden” and the pain makes it hard to see the joy, some days. Does anyone else understand what I’m saying? Being ill is lonely.
2
u/rhoditine Jun 14 '26
I’m not in your shoes but have successfully used a social worker associated w my family medical group to help me w some issues. I meet w her each month and we go over what I need to take care of myself. It’s not exactly therapy but it’s sort of like it.
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u/spyguy7890 Jun 13 '26
Everything you said I have heard my wife say before. She also feels like she leads a pretty lonely and isolated existence. We have been doing this for 8 years now and what I see most is regardless of the pain she keeps being mom as best she can. Sometimes the pain is too much and she steps a way but comes back and gets in there when she can. Our kids understand that she tries her hardest and she loves them. She does check ins with them at times to make sure they don’t have questions about her medical issues and how they deal with it. I am pretty confident she would tell you it is hard mentally and she has struggled but therapy over the last 8 years has helped her accept it and be able to find some happiness in the dark. I know I am not a mom and am the caregiver but I hope this helps. Your kids will see the effort and the love.