When someone asks you how you are, they usually anticipate the response of ‘fine’ or ‘ok thanks’. To be honest they don’t really want to hear if you feel bad.
So that is what I do, say I’m fine or at worst ‘not too bad’ and yet inside I am struggling so much to keep it all together. Even with my family, I lie because it is easier.
With my partner I have shared some of my problems and said how I feel, (like now I am going through a relapse with numb feet and legs and co-ordination problems - not to mention fatigue which is always there + in ability to think straight) but he has diabetes and a bad back and he is not willling or able to give me emotional support - so again it is easier to lie.
The problem is that all the restrained tention, stress and void in terms of emotional support has to come out somewhere. I usually cry, on my own and feel even more wretched afterwards. My partner says I am eternally miserable and he has lost interest, patience with me saying he has his problems and does not complain so I should deal with mine in the same way.
I feel I am not complaining, I just would like a hug and to be understood. Is that too much to ask ?
With most other people the problem is the ‘but you don’t look ill’ response if I ever let my guard down and say how I really feel.
Hi oneshot First of all heres a virtual ((((((HUG)))))) your not alone here, I think probably most of us feel like you do if not at times all of the time I know I do. I think that is the worst part of this disease our symptoms are not visible therefore were ok when deep down inside all we want to do is cry because of the pain & missery it causes us. I dont know the answer I really dont, whilst I get a great amount of emotional support from my husband/family I just wish they really knew what it felt like - not that I’d ever wish this disease on any of them. Have you tried sitting down with him and telling him that you just want a hug and to be supported? I know there will be lots of other forum members that will empathise with you on this topic, I just wish I could be more help Take care Sue x
When people ask me how I am, I make a joke out of it. “How much time do you have?”, maybe because I am very outspoken, I don’t lie about how I am. But I know not everyone is like that and it can be very very hard to get across how MS is making you feel. And it is even worse when you don’t look ill, (hate that phrase, thanks but that doesn’t mean I am not ill), but really people will not know you are struggling, physically or emotionally if you don’t tell someone.
People deal with disabilities differently. Just because your partner doesn’t complain or talk about his problems DOES NOT mean that you can’t talk about your problems. If you feel like you need to talk about the MS, then you need to. Either a group, a friend, or someone in mental health. Even talking here on the board might help you feel less sad, because that is what I get from reading your post, very sad
I’m sorry your feeling so sad. I hope sharing your thoughts on here, helps you in some way.
It doesn’t really bother me about convincing most people about how good or bad I happen to be feeling. It would really hurt me, if my husband or those closest too me did’nt show understanding.
You need to find a way to make your partner understand how your feeling. You could have some counselling…on your own, which may help you to find a way to communicate better with your husband and hopefully improve things.
Many years ago, whenever I was asked by work-colleagues “…How are you?”, I took to replying “…Cr*p thanks - how are you?” with a big smile on my face.
Generally, people laughed …I imagine to cover slight embarrassment at a reply they weren’t expecting. No-one ever followed the initial question & answer up, so they either didn’t want to actually know, or simply didn’t believe anything was other than ‘fine’
Can’t really criticise anyone else for doing this, as I’m just as guilty as anyone of ‘following the established pattern’ myself !!!
I like the ‘crap thanks how are you’ response - I might try that one.
I think I will probably try and vent some of my feelings through this forum if no one minds… you are afterall the one group of people who DO understand and I appreciate you taking the time to give me your thoughts.
And thank you for the HUGS !
As for my partner, well we are not married but have been together for 8 years but we seem to have reached a crossroads in our relationship, this last relapse seems to have been the final straw for him. We are in a situation where we have to sell the house anyway (its a long story) and he wants us now to go our own ways ! I love him with all my heart and always will so if the MS doesn’t make me sad then losing the man I love certainly will.
Any genuine nice men out there please feel free to apply for the post !! (joke … just trying to lighten things up)
Hi Jan, I am so sorry to read that your partner thinks it is time for you two to separate. You say you love him deeply and always will, but if that love isnt reciprocated, then perhaps splitting up is the only thing to do.
Now about telling peple how you really feel when they ask…
I find it tiring and quite upsetting to go into detail with anyone. So I have just a small handful of people, and somtimes just choose to tell only one person how I really am and if somthing specific is weighing heavily on my mind.
I find if I tell the same thing to often, it makes the problem bigger.
My hubby is main carer. I rely on him for many things and he has pretty bad rheumatoid arthritis to cope with as well. He is not one for talking about emotions. However he will do anything practical for me. I share my innermost feelings and concerns with either my sister, or my morning carer. I know I can trust them both with anything.
I do often have to hide my upsets from my hubby, as I can tell he feels somehow annoyed if I do voice how difficult I find life.
I want to wish you luck for the future. It will be hard when the parting of the ways comes for you and your fella. I hope you have that 1 special friend who will support you emotionally.
Sending u a BIG HUG!! You have summed up how I have been living for the last 9 months (much before that, but didn’t know) your partner just needs educating about your condition. If he understands more, the more supportive he can be, be honest ( it hurts I know). But it’s better to know how he feels, so your future can be planned. All people have health problems, it’s about asking for help when u both feel down. Xx
big hugs