Feel so alone and quite annoyed support non existent :-(

After 3 years of tests I was dx in August 2012 andI started dmds last month. I live on my own with my 8 year old son after my husband and I separated 3 years ago. The rest of my family live 100 miles away. During all of this time they have never called me to see how I am…it’s always been me calling them to tell them the developments. It really annoys me that when I do call my mum, she tells me that she called my brother (who lives near to her) to see how the kids were or to see how he is recovering after having ‘manflu’. What about calling me to see how I am coping or to see how her grandson is??? If the conversation does ever to me she always says how ‘such and such’ person’s neighbour has MS and they. Perfectly fine and that daily injections are just like someone with diabetes taking insulin. It’s really getting me down now…like my family just aren’t even bothered or care :frowning:

Hi Amanda, That sounds horrible, I’m lucky that my family are supportive but don’t breathe down my neck about things. I think we have a great ‘family’ going on here. While my family can be supportive they can’t fully understand what life is like. As a cyber ‘sister’ I send you a (((hug))) and how you doing? Sara x

hi amanda

you are really new to all this and so are your family.

my dad is wonderful but he is still learning about my ms.

i have to let him know bit by bit.

his partner is easy to talk to and she is having bladder problems right now.

i have some expertise with this and had a good chat about self catherising and the wonderful patches i have to calm my overactive bladder down.

maybe this time next year my dad will know that bit more.

what i’m trying to say is that parents need time to come to terms with it.

you need to see yourself as strong and independent (which you are) and although some motherly love wouldnt go amiss, you are strong enough to wait for your mum to get with the programme

good luck with your ms journey and enjoy your son. 8 yr old boys are great.

carole x

When I was first diagnosed back in 2007, my Mum said that someone I’d been at school with was thought to have had MS but “is alright now”. I think there’s an element of disbelief and also that people don’t know what to expect. I had the same problem.when I phoned my Mum up - she’d talk about things going on in her life, then as an after-thought, ask how I was, then start on about herself again. It’s like when someone dies. People feel awkward and don’t know how to be around the bereaved. One thing I’ve learnt is that, as much as you hope people will be compassionate and aware, they’re not. They get on with their own lives and assume you’re doing the same. If you need help, you have to ask for it. Sometimes that can make me feel frustrated, humiliated, embarrassed, angry - you name it, I’ve felt it. But, I am in control of my own life. If I need help, I ask or they assume everything is OK. Heather

don’t know what to say but sending you a virtual hug (((((((())))))))

max x

I know what you mean. I don’t have any answers for you. I’m sure it’s not that they don’t care but because they don’t see how bad it can be, they don’t think it is that bad. Everyone gets so wrapped up in their own little world that they just forget. It doesn’t mean they don’t care, it just seems that way.

My family do live locally but they still forget to ask how I am or to offer help. I have to be blunt and tell them when I am struggling and need a bit of help. My brother phoned and woke me at 9.45 am the other Sunday and had the cheek to tell me I should be up by then anyway. I work at a school, am suffering badly from fatigue after a relapse and had had friends round on the Saturday straight after breaking up for half term so I was enjoying a lie in. I’m afraid he got a very grumpy answer!!! He was a bit more understanding when he called round an hour later :wink:

That’s why this forum is a blessing. On here, everyone understands exactly how MS affects you and we can have a moan, laugh, discuss the more embarrassing aspects without blushing etc. I have said ever since I was diagnosed the only ones who really understand are other MSers. I have given up trying to explain to friends, family, colleagues how it affects me because they just cannot comprehend …

Anyway, here’s another virtual <<<>>>>. Treasure your son, he will understand because he is there every day. My son was 15 when I was dx’d and is now 19. He often orders me to sit down and will take over whatever I am trying to do so I can rest but that is because he sees it all the time and he knows the harder I push, the worse I will get …

Take care

Tracey xx

Thank you for the hugs, they mean a lot xx I cried myself to sleep last cos I felt so low and fully had it in mind to ring up with some sarcastic comment, but think differently today… I do have a good friend who comes with me to all my appointents as ‘my extra pair of ears’ and to be quite honest she has been more like than mum than my mum has. My son is amazing and even though he he is only 8 he is so grown up about it. He even reminds me to do my injection if I’m busy! I get it there may an element of denial/guilt or whatever but it still hurts all the same. At least I know I can come here for a moan and hug :slight_smile: x

Let’s cut to the chase on this one and stop making excuses for these useless relatives. Let’s stop making excuses for them - ‘they’re in denial’ or ‘they can’t come to terms with it’ or ‘they don’t know anything about m.s.’ Some relatives/friends are supportive others not and we’ve to accept that. My experience is that people don’t change - the initial response when you tell them you’ve m.s. usually a good indicator of how they’ll be in the future. Trust your judgement if you’re not getting support and feeling aggrieved and distance yourself from them - what have you to lose?

you know amanda it can be lonely with this condition but keep hold of that good friend they are worth theeir weight in gold, I have one like that and he doesnt even know how supportive he has been

You are all so positive and it is great, as a student healthcare professional I see a lack of family support continously for those with MS, I often meet most people with the condition at their most difficult time, where there is no one else they feel they can call to help, I’m not family to you, but there are always other people who care, including me and the ability to help you back up and put the kettle on :slight_smile:

Hi Amanda,

I really feel for you. My family are really good. They don’t get it but they do really try. My dad has Emphysema. So it’s really tough for my parents. My brother lives in London and he makes a massive effort to meet me once a week. I’m very lucky.

I think that some people are just scared. They don’t understand and possibly don’t want to understand. Fear of the unknown. I think that maybe that is what your mum is doing. Just give her time. Talk to her. Tell her how you feel. Don’t ostracise them. Family are the most important thing that you have.

In the mean time, I would like to join with the others and give you a great big Welsh hug.

Adrian x

Hiya - I totally understand and I’m in a similar situation. I have no support from my family and attended all my hospital appointments by myself. Still do. For some reason MS is not considered ‘serious’. Because I look ok it must mean I am ok. Or exaggerating or being a drama queen when I talk of these symtoms. My brothers have never mentioned it. Like its a dirty secret. My mum;s first reaction to the news was ‘you should be able to get benefits’. Unbelieveable.

I work full time and am a single mum. My 11 year old is all I have I try not to say to much to him because after all. hes only 11 and I don’t want to burden him. None of my work colleagues know I have MS. I don’t feel close to any of them to confide in I feel so utterly alone sometimes its numbing by itself. Sometimes I get so used to doing everything alone I feel I can isolate myself and not quite know that I’m doing it. You are lucky to have the friend you mentioned. I would be so grateful to have someone like that.

Aww bless you all for your hugs…and thank you again. It’s kinda good to know that I’m not the only one. I don’t think my friend realises what she does by being there means so much although I do try to tell her. I’m off the see my sister at the weekend…she is the only oné who does try to understand so I will talk to her about my mum and brother to see what she thinks. keep well everyone x

I really think my Mum sees it as evidence that she is a bad mother. And it’s her fault.

She even apologises sadly that she provided me with the genes - either her genes or from the man she chose to marry and have kids with.

That sums up my family! Thanks to my Grandma. My Dad used to give me a hug when I was an adult, but my Mum never does. She was brought up to believe that you don’t have emotions, and need to keep them hidden. Which means getting the support I need difficult, and also for her to get support virtually impossible! I learned to feel guilty and ashamed about being ill or having an accident - it’s all my fault and just what I deserve, according to what I learned as a child.

All of which means she really doesn’t know what to say. As me and my brother have never been taught, he doesn’t know what to say or do. He does ask how I am, and doesn’t say anything that could be hurtful to hear. We just don’t talk or see each other often.

I do have a good friend who looks after me. And a wonderful boyfriend, who I’ve been with since 1995. So I am lucky, but my Mums responses and comments can completely destroy me at times.

I must remember to come and have a moan on this forum when I need it - our lives may be different, and our MS may be different, but we do share the pain we feel from the words of other people who just don’t understand.