The Heartache Of Family's Mistrust
Last updated: June 2017
I was diagnosed in 2006 and have worked hard to compensate for the fatigue and terrible cognitive toll MS has taken on my body and spirit. I recently moved to live near my son and his family, who weren't witness to what I've been through and how my MS has affected me.
Last summer I began a relapse which caused horrifying cognitive events, symptoms of mania and panic attacks, among many physical problems. My son and his wife were unprepared, and my relapse put them through a lot...trips to the ER, strange behavior and a lot of worry. I know I put them through hell.
My many efforts to help them understand that MS can cause all of those symptoms have fallen on deaf ears. They refused my invitations to accompany me to my neurologist appointments. I begged them to simply Google MS symptoms on any website, which they've refused to do. They know some very functional folks with MS who have no such difficulties and are certain that I only need to eat right and exercise, and that I'm just making excuses.
Things have stabilized for me, but we can no longer discuss my MS. I'm living in the moment, with gratitude for feeling as well as I do. But the possibility/probability of my next relapse is heavy on my shoulders...not so much because of what it will do to me, but what will happen to my relationship with my family.
Anyone out there with any suggestions?
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: