The Heartache Of Family's Mistrust

By mickle13

1 min read

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?

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maddi86 Member
I don't know what to make of my family when it comes to being there for me with my MS since they really aren't there for me for anything else. My husband who is there for me the majority of the time knows I have MS and sees some struggles is aware at some point down the road I might be bad off but still I think at times he is in denial. My eldest son knows but he is grown and not around but I keep him informed as I can without worrying him but he is starting his life trying to find his way in this crazy path of life of dating, work ect..as well as my ofhers who are getting ready to be seniors. I do have an ex husband who is trying to sue me for custody even I have been an excellent mom , he is just a jerk and actually trying to use my medical against me.
kamie Member
I'm sorry you have struggled with family relationships. I wish had suggestions as this is something I am trying to work through also. Just wanted you to know you are not alone and actually it's something I've seen posted on other MS forums also. Most of my support has not come from family. They try there on way but it's like you said...if I would just eat this or do that.I and I do try. It just seems they ddhould be angrybat MS not me. You know?
kamie Member
I'm sorry you have struggled with family relationships. I wish had suggestions as this is something I am trying to work through also. Just wanted you to know you are not alone and actually it's something I've seen posted on other MS forums also. Most of my support has not come from family. They try in their own way to help but it's like you said...if I would just eat this or do that.I and I do try but it usually ends with their frustration and my tears.. It just seems they should be angry at MS not me. You know?
CommunityMember9f00e0 Member
My family loves me, but I don't think this is where my strong support will come from, although, there is love and that is supportive. I was referred to a neuro-psychiatrist who specializes in M.S. The support through the hospital included significant cognitive behavior therapy. The referral came from the MS clinic in a large teaching hospital. I must admit, my family was at that first appointment where the referral was given. They were by me to state that I was having trouble with the diagnosis. I go to appointments alone. It helps me to be assertive with my own health care. It is really hard when our family members cannot give us the help we need or the help we think we need. The realization of being alone forced me to get outside help. Still hard.
chowi Member
It's a terrible feeling when those you love don't believe what you say. But it also sounds like they are in denial. As long as they can tell themselves that you don't need help, then their lives won't have to change. That is their problem--not yours. If you can't make it out to dinner with them, suggest they pick up some take-out and join you at home. Can't join them for a movie? Hold a movie night at your place (sleep through it if you want). Hopefully as they grow older, they will also grow wiser. In the meantime, continue to build a network of outside support. Don't make your life revolve around them and their approval.
timboslice Member
It's always hard to have explanations fall on deaf ears. I'm pretty new to the MS game (Just over a year diagnosed with a "particularly aggressive case" per my Neuro) and I have kind of a similar situation. Everybody has someone they know who just has a flare up and needs a cane once every 2 months it seems. Or takes a lot of naps etc. etc. etc. It's always (insert name, probably Debra or Henry) from work and they think it's all the same. I'm not sure there's a way to get people to show interest because it's depressing for them to get into someone's shoes with an actual problem. My family still acts weird when I talk about things even though it's what I've been saying forever. Outside support is important, events that bring people to you are important (I hold weekly board game nights to keep in the loop with friends), and I find my friends are often more empathetic to my issues. Just persevere and hope it clicks for them, but if it doesn't it's really their loss as unfortunate as it would be. I know I had a coherent thought somewhere in there, and regardless of how it's presented this seems to be a good place to talk to people with similar issues.