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Family Understanding

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  • tjcann00
    Family hurt.

    I've been dealing with family issues and my MS and depression also. No one understands or I feel even tries. Diagnosed in late Nov. adult daughter hospitalized for sever alcoholism, my Dad (my most favorite person in the world) passed away in Feb. and I can't pull myself out of the depression.

    Do you think my family understands this? No, they don't want to here about MS, they think my daughters an adult and needs to deal with it her own problems, and Dad's gone, get over it! I've suffered from clinical depression for over 20yrs, and never had much support or understanding for it either.

    I know they aren't in my shoes and can't truley get it all but I'd just like the support I need from them, not what they think I need. I want them to listen to how I'm feeling and thinking. I love my family soooooo.... much. My children (3 daughters) have always been my life. They've pulled away from me as well as others.

    My mom is grieving the loss of her husband and needs to take care of herself right now. I just feel so alone. Truely never been this low before. Rebif didn't help, made me so depressed I took too many pills and ended up in the ER. We will try Avonex now. Wish me luck. Thanks everyone here for giving me a place to get this out. Been holding it in too long. I'll try to lift my head up a little more each day, hope you're with me. God Bless!

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

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  • Kenmore
    Dear Negative -

    After about a year of becoming severely depressed over this situation, I had to make the decision to accept the circumstances the way they are. It was very hard, and I cried several times a day over it. I ended up taking 8 months off of work because I was so emotionally drained over this and just everything that I had to deal with physically, emotionally, etc...from my first attack and after my diagnosis. In addition, both of my dogs died...just a really sucky few years.

    I was absolutely heart broken over my family. Particularly my mom. And I still don't understand. But, I had to accept it because I didn't want to be miserable anymore. I mean literally MISERABLE.

    So, I thought...what do they say...they say when you feel awful do something for someone....service. So I started to volunteer, really just to get out of bed and to be around people.

    It has turned my life around. My goal was to be around like-minded people who are caring and to do something that I would feel rewarding...service and love and what I found out is that you receive love back.

    And so now, it still is heart breaking to think about my family. And I still am accepting this, but I have surrounded myself with people who are loving and caring. And I find great reward with the volunteer work. And it is not too much effort.

    I thought that it was my MS that was making me so tired and why I could not get out of bed. And maybe that was part of it. But, I don't feel that way anymore now that I have moved forward.

    I can see how it would be the worst ever with your spouse. I don't know how I would deal with that, as it is a daily in person reminder of their actions.

    Often people with MS going through this, like we are, need anti-depressants. Maybe something to look into.

    I am sorry you are going through this.

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  • negitave person
    I have has similar family issues. The are hard for me to shake, Its sad to find out the people I love and respect trned out to be a pack of Bullies. and equally hard when my DW joins in with the despairing words. I dont have much hope in anything or anyone. try your best not to be like me

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  • Westgrl
    I'm really sorry you're going through this. I've always said that I don't try to force people to understand what I am going through. But when people you love actually put you down for it, refuse to understand you have limited abilities, etc that is truly hurtful.

    The problem there is that they don't seem to want to understand or care. I don't know how you react when they walk all over you like this.

    I tend to get ugly back. Like when your Uncle told you that you have your head up your *****financially... my reaction would have been to tell him that he has his head up his ***** about my health & how nice it must be to not have to deal with a chronic illness, medical bills, & to be in pain daily. But thanks for your support Uncle, your concern is truly heartwarming.

    Since you don't live close by, it's easy for them to remain in the dark & judge when they don't have to see what you go through on a daily basis. It sounds like their concerns are more for selfish reasons.

    My only suggestion is to not let them beat you down verbally and surround yourself with positive people. Whether they be friends, other relatives, support group, etc.

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  • Paloums410
    Family understanding?

    My dh has had MS for over 25yrs. His mother only cares about how his MS stops him from doing anything for her.She functions just fine. Our daughter(39yrs) has chosen denial.(more like no more attention for her).
    I have brought her(the mother) to support meetings,gave her plenty of literature on this subject but, as I've heard from many people family stinks.
    People that have support from their family are extremely lucky.
    There's a chat room here on Wednesday nite (8Eastern?)

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  • Kenmore
    started a topic Family Understanding

    Family Understanding

    Hi there,

    I was diagnosed in Feb of 2011 after my second attack. I had my first attack in Dec of 2008. I am single and live alone. My family lives in different states. I am an independent consultant, so my income is dependent on projects I get from clients. My first attack took about a year to recover from. Probably because I was under a lot of stress and my GP told me there was nothing wrong with me - even though I expressed concern that I had MS (I had a dream about 11 years ago that I was told I had MS - that never really left my mind).

    So from my first attack up until my diagnosis and getting on Avonex, I could not work much. The work I did was part time projects and I did a horrible job, which caused me more stress. I could hardly get out of bed - I'll address this more below.

    I had my second relapse after my family came to visit for Christmas in 2010. My family was extremely supportive and planned to move here to be near me and help me. They wanted to get involved with the MS Society as well. I felt so loved and supported - more than ever in my life.

    During the next 6 months this all kind of went away. No follow up about moving or being involved with the MS Society. Our communication lessened.

    In addition, my best friend did not understand. I think she felt like because I was living a 'normal life', that I should be available most of the time. One of my largest issues has been fatigue - she told me that she had a friend with Lymphoma and she still went out, even during her chemo.

    Recently, we had a family vacation. I had to drive about 1300 miles there and back. It was a good time, but during this time my 'life' came up. I was very shocked and hurt by the things I found out on this trip.

    I basically found out that my family has no idea of what I've been going through. They all individually made me feel horrible about my life. They criticized me for not being more financially secure. They said asked me 'what has happened to you? You used to have it all together'. I sat and listened about my weight and how I should be able to deal with everything because I am a 42 year old woman.

    All this time I'm in a personal 'hell' struggling with daily life. I think the emotional ramifications as well as the physical and now fatigue without a support system just flattened me.

    My uncle calls me and tells me "I have my head up my ***" financially. Although he doesn't know or doesn't accept that I had to go through my savings and retirement funds because I could not work much for almost 2 years. My brother also did the same - he also said that I only have 10 'good' years left before I'm done in my career and financially.

    My mom told me at one point that I was acting like a victim. Although, because of our lack of communication, I was realy only trying to educate her on what this has been like.

    My mom is the person who asked me what happened to me.

    Hi mom! Lets see - I had my first attack that took a year to recover, I was so stressed out about work, feeling so guilty, both of my dogs died within a year (they were my children and kept me going during this). Not to mention the emotional toll of losing them and going through their illness and taking care of that by myself. One died unexpectedly on the staircase one afternoon and the other after a surgery the day before he was to come home. I have 2 brothers and one was upset with me for not going to the family vacation last year.
    He told me that my dog was just a dog. I called my parents just after it happened and my mom's response was that 20 years ago they had a dog that died at home. But they also have dogs now and my mom has said that if they die, she would not know how to go on. So it is not like she does not understand. My dad has been very supportive of these situations, but very quiet. He's never said anything negative.

    I sent an email to my family letting them know that I really needed some support. They all have spouses, etc. There was no response to my email. This was about 6 months ago.

    Going back - During my first attack I literally was crawling frequently and I would be in bed for 2 days after going out to run errands. I would take the dogs for a walk because they needed to get out, but I was in so much pain. I was just struggling to make it through each day - trying to deal with my responsibilities and my dogs and work and finances.

    Before their 2010 Christmas visit, I did everything to make their visit nice. I even drove 3 hours to get the perfect Christmas dishes. I spent about 2k to get everything set up with linens, beds, Christmas decor, you name it (I had my second relapse after this).

    Then I'm asked 'what happened to you?'.

    I was hurt when the plans for everyone to move her and get involved with MS didn't come through, but then to ask for support with no support really hit me. Then the recent vacation comments. I remember telling my brother that I just needed 2 minutes to talk to my parents and hear them say that they loved me...sincerely. His response was 'it's never 2 minutes'. He could only know that by talking with them.

    So after all of this, I'm just left dumbfounded and feeling pretty awful. I think, as with my friend, they must think that because I physically (besides fatigue) am symptom free, that I'm fine? I don't know. I do know that picking up the pieces on a daily basis and living emotionally and physically with MS is very difficult.

    I'm mostly ranting, but would like to hear if anyone has been through the same type of experience. Thank you for listening.