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Sister with MS - need advice.

My sister was diagnosed about 3-4 years ago with relapse and remitting MS. Since then she has had a few relapses however she never seeks the right support. I am very concerned about her, naturally. She has an MS nurse whom she never sees, and only sees her consultant a couple times a year. She has never sought help from the local MS society – which I can understand as I am sure that it can be very distressing to see others with the same disease worse than she is.

She also suffers bipolar. So her mental health isn’t great at times. She recently began cutting her wrists and had a couple of stays in a mental health home for a night, however her mental health seems to be ok just now.

She has a full time job in sales which he does love but struggles with due the fatigue and it requires a lot of driving about. She recently now has began having problems with her urinary continence.

I obviously care and worry about her, however I feel that I am stuck. She consistently texts me saying how she cant cope anymore and about how tired she is and about how her life is “so awful” and “so sad”. I have spent the last 3-4 years encouraging her to be as healthy has she can be (she is over weight), and she has recently started swimming again, but its not consistent. She doesn’t eat well which means then she is weaker and tired. I have tired to encourage her to keep snacks in her drawers so when she is in bed and wakes up hungry she can have a snack but she wont do it. She has such a defeatist attitude and its starting to take its toll on me. I feel as if I give her advice and she never takes it. She is her own worst enemy.

I have been so understanding – without being patronising- and I really do feel for her as MS is an awful disease. But it is so hard to try and be around someone so negative. She continuously refers to how she’ll be “in a wheelchair by the times she’s 60”. I have my own health issues at the moment – I had a preventative double mastectomy 4 months ago, and am now having my ovaries removed. And I feel that I am stuck between a rock and a hard place – I want to support her the best I can but I feel as though her issues are intrusive on my own life. She is very dependant – text me all the time about how crap she feels her life is, I wonder if she would so this is I was married with kids?? I cant just drop everything every time she needs me. She only has a handful of friends, who all have kids and partners, she is on her own. I feel responsible for her.

I know I must sound so selfish and mean. I don’t mean to. Its just I feel so stuck. I have began to feel as though I do not want to be around her at the moment.

Does any one else ever feel this way?

Front-line healthcare professionals learn early on to detach themselves emotionally from the human distress that they deal with every day so that they can do their job for their patients without rendering themselves useless through emotional burn-out. Harder with nearest and dearest, obviously, but the same principle probably applies, to some degree at least. If you want to keep helping your sister, then you will need to find a way of doing it without letting her drive you up the wall. It sounds as though the situation has come to a head a bit. Maybe because you have had serious health issues of your own - perhaps you had hoped that the sisterly support would work both ways and you are disappointed that your sister has not offered much emotional support to you when you needed it?

There are strong emotions involved here, and it does sound as though you are finding all this very difficult and draining. My strong advice to you would be to talk through your feelings with a professional counsellor. A trained listener can be tremendously helpful in letting a person put a new slant on things when a situation has got locked into the kind of futile and draining stasis that you seem to be in here. That is what counsellors are for, and they are good at it. Sitting down there and just letting it all out, without fear of being judged or criticised can be very liberating for its own sake. But it can also be a real way of unlocking seemingly intractable problems.

Good luck.

Alison .

Sounds like a very difficult situation for you both, but you are just as much as deserving of some tlc and some care and attention and a shoulder to lean on. If she is still holding down a job, she is obviously still able to take care of herself to some degree and take responsibility. Evidently, yes the fatigue and issues regarding ms do affect her, but there are people on here with young families such as myself, that do have to carry on and just ask for help when it does get too much. I don’t wish to sound harsh on your sister, but I guess when you only have to take care of you, maybe perceptions of how needy you are become blurred. Sorry if I am not making sense, but what I mean is, as a mum, even if you are dying, you know it’s your responsibility to take care of those children no matter what. Someone who has never had that cannot possibly understand that actually you can scrape yourself up even when you feel like the living dead, and do things. Have you discussed your own personal needs with her? It might actually do her some good to firstly realize you are struggling with health issues right now which has led to some extensive life altering surgery, and secondly, it may just make her feel needed rather than needy to be there for you for a change. Take care of yourselves, and I hope you can achieve some resolve soon X

I am really sorry you are in such a difficult situation, it must be really hard. You should not feel guilty about putting yourself first, or saying no, or not being able to drop everything everytime. You need to look after you. You are every bit as important as your sister, and you also need support and care, especially when you have been having serious health difficulties yourself.

I would however very strongly disagree with the last poster who suggested that if only your sister was a mum, and understood what it is like to have children, then she would be abe to summon ability to ‘do things’, even if she feel like the living dead, and to not be needy. Bipolar Disorder is a very difficult condition; and to suggest that someone can just ‘summon the resolve’ to ‘scrape themselves up’ from depression or mania is a bit like suggesting that someone with mobility difficulties could summon the resolve to walk if only they tried hard enough. One of the most frustrating myths about mental illness is that if people tried harder or were less selfish (if only they had kids to think about!) then they would be able to get better. it just does not work this way. Your sister is not ‘selfish’ for being ill, and it can be very detrimental to a relationship if you start seeing a person’s illness in those terms. However, it does sound like she is over-relying on you, and that this is having a profound effect on your reationship, and on your wellbeing and health.

I agree with Alison’s suggestion that counselling might help you talk through your feelings. Is there a local carers organisation that you could get in touch with? They might be able to give you some advice or support about how to deal with it all . Another possibility might be group counselling, if you and your sister felt up to it; where you could both discuss with a counsellor how her illnesses effects both of you, and how to set boundaries in order to make sure that you dont feel over pressured or over stretched. It would also help her to understand more about your situation and problems; and I agree with the last poster in that respect - it might make her feel more ‘needed’ than ‘needy’, and help bring the relationship back to a more equal footing. Since you have both been having such difficult time though, it is potentially a volatile discussion to have, and I think possibly it would be a good idea to get support with this, from a trained counsellor etc. It might also help to discuss ways to spend time together outside of the context of support / health /illness… perhaps doing things together that you both enjoy, without any focus on depression or ms.

There are ways through this, and there is support available for you both . do not be hard on yourself for feeling this way; you do need to look after yourelf and your own health, and to prioritise your own wellbeing.

Hi Your sister sounds the very same as my wife,she will not seek help from anyone she has only seen the consultant once and he said there was nothing could be done for her MS,she has seen a nurse a couple of times but does not let on how bad it really is, she still has a part time job in a office,but I have to drive her to the door, and is so tired when she gets home, she keeps bursting into tears and telling me how bad her life is and it would be better if it was all over, .the more I tell her to seek help the more she digs her heels in and says theres nothing can be done about it, I know about that feeling of beig stuck.

this thread was started 11 years ago! this reply is for the anon above. your last line sums it up. what a selfish person your sister sounds. i feel for you and those around her. sorry if this sounds harsh but i have always said that ms may be tough but its much harder for those who care about us! ellie

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