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Sukha14
Casual Contributor

Need more support for spouses who live with bipolar partner but who are not in crisis

After being married for 20 years to a man I just thought was eccentric and getting to a point where I thought often about how I could leave the relationship my husband was diagnosed with bipolar after a terrifying (for me) psychotic episode. Finally we found out what was wrong. I was completely and utterly ignorant of the illness and thought it only happened to 'other people'. The diagnosis was a blessing in disguise as he went on medication and started doing really well. I mostly saw his manic phases and not so much the depressive. Life was stressful, intense and chaotic for years and I never knew why. The medication has saved our marriage. 6 years into his doing well on medication he stopped taking it because he thought since the dose was so low he just may as well go off it. The usual story. The second episode saw more of the same but this time was slightly less terrifying for me though still traumatic. This time he gained a greater understanding of his illness and seems securely convinced that he will be on medication for the rest of his life. He is lucky in that he has little side effects. It is hardly ever mentioned and I think he still would rather we just pretend as much as possible that the illness is not a part of our lives. In fact I am not really allowed to mention it without him accusing me of controlling him.

When in crisis there is help out there. We got very good care eventually and were lucky to go into a private clinic which was heaven after a psychiatric ward in a hospital. But now he is back on track and taking his meds all is NOT always well and easy-going and he is not cured. I still live with confusion on many days because I don't know what is 'normal' for someone with bipolar and who is on meds and doing ok. I am really frustrated that there seems so little discussion about the ongoing living with the illness. Living with it when mostly our lives with our partner is ok but then there are moments when you are having one of those irrational conversations and you think you are going mad again and it reminds you of the old days 'pre meds' and you start to feel scared again. But it's mostly ok. You find yourself asking yourself: "Is that the bipolar talking? Or am i just being a pain and looking for it?" I wish I could talk to other people who live with well-functioning bipolar disorder in their spouses because I still get confused and don't know how to deal with it. Mostly the conflicts blow over thanks to the meds which keep him stable. But I don't know what is possible on the meds. That is, can he still become manic?  And all the other symptoms he had before but just less of? So much confusion and frustration because on the surface it looks like he is doing super well all the time. Our friends don't notice anything but we who live with this day in and day out know what we have to live with. And some days I feel like the bad one and I am guilty and I am tired of feeling like that. It helps if I tell myself that a certain mood is his illness talking and not him. I treat it less personal from his side and that seems to help. But I can't do that all the time. He still has such an intensity of living that exhausts me at times and I wish there was somewhere for family to go to get the reality check. Yes my bipolar husband is doing well but he is still living with a serious illness and I think I am still seeing symptoms and I need help understanding them. I hope next year on ABC Mental As that they give more attention to this aspect of the illnesses. Carers who live with high-functioning people with the illness still need support.

Thanks to anyone who has read this far.

10 REPLIES 10

Re: Need more support for spouses who live with bipolar partner but who are not in crisis

Hi Sukha14, welcome to the Forums!

It sounds like you’ve been on quite a journey over the years and have been an incredibly caring and supportive wife. Well done! I’m so glad to hear that things are better with the medication, although it must be confusing trying to get a handle on what is cause for concern and what’s normal for your husband.

I think you’ve come to the right place for talking to other people who live with partners with bipolar disorder. I know @workthisout, @disquiet, @Lucky2015, @Joyjoy68, @Smokey have all gone through difficult time with partners living with bipolar. I’m sure they can relate to your story and might have some insights to share. You might also like to checkout this thread.

Have you spoken to your husband’s psychiatrist or GP about the meds and what to expect? I’m also wondering, have you been in touch with any organisations that provide family/carer support? Depending which state you’re in, there are some great organisations that organise support groups, counselling, workshops for family members, etc. As you suggest, it can be hugely beneficial to connect with other husbands/wives/partners in similar situations.

I loved watching Changing Minds during ABC’s Mental As and found it really informative. I agree, it would be great to see similar coverage of people at different stages in the journey of managing their illness. There are a few conversations about Changing Minds happening on the Forums. You might like to add to one of these discussions:

http://saneforums.org/t5/Our-stories/Changing-Minds/m-p/36625#M2172

http://saneforums.org/t5/Our-experience-stories/Just-watched-Changing-Minds-and-could-relate-so-much...

http://saneforums.org/t5/Our-experience-stories/Concerned-about-last-nights-ABC-programme-quot-Chang...

We are also having a Topic Tuesday from 7-9pm tonight about mental health in the media.  @Jenni_H, ex-ABC journalist, and the current coordinator of SANE’s Stigma Watch program will be joining us to talk about the role of journalists in mental illness and hear Forum members’ views. It would be great to have your input! You can join the conversation here.

Welcome once again @Sukha14. I look forward to hearing more of your story.

Re: Need more support for spouses who live with bipolar partner but who are not in crisis

Hi @Sukha14,

Nice to 'meet' you. I think you're on to something when you say that it seems like there's a need for support for people who unwell but not in crisis. Not just for carers but also people living with MI. It seems like there's services out there to get people well, after they become ill, but we could certainly do with supports that look at maintenance too!

Anyhoo, I think this is great start to bounce thoughts around. I think most can relate to the experience of asking the question - is that their illness talking, or is it them? It's so hard to know where the illness starts and stops. @Lucky2015 wrote about this here. I'm not sure there are always clear boundaries between symptoms and person's behaviour. Either way, I wonder if it might be helpful to look at ways you can minimise the impact of certain behaviors. 

Can you give me an example of some your hubby's behaviour that you are concerned about? Perhaps we can think of ways you might be able to limit it's impact. 

We got an online event tomorrwing that you might be interested attending. It's about carers sharing knowledge and info based on their own experiences - things you wish you knew when you started caring. It'll also feature a peer support working from Helping Minds - an organisation that provides support to carers. I hope you can make it!

CherryBomb

 

Re: Need more support for spouses who live with bipolar partner but who are not in crisis

Hi. I don't think there's a definition of normal, everyone is different. I too feel like I'm losing the battle with my partner sometimes as he goes through his ups and downs. I just keep remembering that he chose me because I was strong. We have really great support with psychiatrist, psychologist and counsellor. It's a lot a people but each one plays an important role. We see them together and separately. I'm mentally strong majority of the time but they really help me when they ask how I am, they explain what is happening and give me ways to cope and help him at the same time. I really appreciate reading everyone's comments here too. Stay strong and remember to smile.

Re: Need more support for spouses who live with bipolar partner but who are not in crisis

I'm certainly no expert with bipolar indivduals, however, I consider myself an expert at living with an undiagnosed man who suffered with a personality disorder.  Although he was undiagnosed, and thereby unmedicated, my life with him was a roller coaster in which I got no support.  It is beyond frustrating to be living with someone who somehow manages to appear OK, but really isn't.  It invalidates your experience and also prevents those that are nearest and dearest from seeing the severity of what you are going through and offering support.  Regardless of whether an individual has bipolar, depression, schizophrenia or whatever, support and acknowledgement of what you are living with in your every day life is important and makes all the difference.  Additonally, when you live with someone afflicted with a mental illness you become desensitized and lose your objectivity and ability to determine what is abnormal/slightly abnormal/very abnormal etc.  

In situations like this it would be great to join a group of other carers who are going through the same thing.  I'm not sure if such support groups exist, but it would be well worth researching what is available within your area.  Feeling supported by a group of individuals who completely understand what you are living with is essential.  It helps to disperse the guilt, the confusion and craziness of it all.  I wish I could provide a link to hook you up with such a service.  Start researching and see what you can find.  

Joining this forum is a great step in the right direction, but if face-to-face contact with others may be of greater benefit.  You also need to consider getting some counselling/therapy for yourself.  Carers have needs and complex life situations that need extra support.  Being able to discuss your issues with a professional may also be very beneficial.

In the meantime make sure that you look after yourself and allow for time-out and self-care.  

All the best

Janna ❤️

 

 

Re: Need more support for spouses who live with bipolar partner but who are not in crisis

Thanks for sharing,your reply Kawasaki   I really appreciate hearing your story.  I totally agree, there needs to be support for careers, lots of support for careers.  As often, those with bi-polar think that they are fine, and it is the carriers that think that there is something wrong with them.   I am not sure about the medication side of things, as my partner/ friend think medication is his enemy, and after 15 years has just decided to take it.

i can understand how scary it is when they have a psychosis.  My step son moved in with me and had one.  Whilst at first you think you may have misinterpreted what they said, but then it is scary.  And as he want my son, and I had left work to look after him, I didn't know what to do.  I just made sure he was safe, then called the ambulance.  It is very, very frightening when you experience someone with psychosis.  

Know that you are on the right track, and have faith in yourself.  Trust yourself, that when you feel things are not right, they are not right.  It is difficult with friends, and I found myself isolating myself from friends, as I don't know what mood my partner would be in after we came home from socialising.   

Take care, thanks so much for sharing your story, and have faith in your judgement.  You have done a great job for 20 years.  Remember to look after yourself as well. 

Re: Need more support for spouses who live with bipolar partner but who are not in crisis

Thanks for sharing your story.  You are doing a great job caring and supporting your husband. Remember to take time for yourself.  My partner chose me beacuase I am strong too, but I find myself wavering at times.  I need to think of me as well.  Remember you are important too, and deserve to smile.  

Re: Need more support for spouses who live with bipolar partner but who are not in crisis

Thanks people for the replies. I have been mentioning the need for a support group for carers in my situation for a while now whenever I am in contact with a professional organisation. Maybe somehow over time this idea will catch on if I keep talking about it. The sort of group I imagine is a group with people who are doing ok usually andjust a need a check in and to know that there are others out there like all of us.

I have thought of starting one in my city but I don't have the confidence to break my own anonymity and I feel I need to protect my professinal life. So there it is again, the stigma. We are not out of the waters yet with this one.

In time, I hope.

 

Re: Need more support for spouses who live with bipolar partner but who are not in crisis

Hi @Sukha14

I'm not quite sure where you are situated, but ARAFMI is a good place to start when looking for groups.
They have an ARAFMI in each state. If you're in Vic or SA Mind Australia might be helpful or HelpingMinds in WA.

Hope they can be helpful for you!
We are also here and can be like a 'virtual' support group 🙂

Re: Need more support for spouses who live with bipolar partner but who are not in crisis

Hi,

I tried an ARAFMI facilitated group. I sat there with mothers of teenage sons with schizophrenia who were coping with them not getting out of bed in the mornings and not working. All their stories were foreign to me. I realised that some organisations put all mental health issues together in one lump. They are NOT all the same. I need to relate to people who are living with bipolar spouses/partners. I cannot relate to this issue in children or even teenagers. It is my spouse I live with and it is with him I need to relate and get identification from other people married or partnered. This is what I am seeking. I cannot really identify with others in crisis either as this is not us at the moment. I am seeking an ongoing support gruop for people who live with high-functioning people who are living most of the time WELL with the illness. This is because I sometimes need to get a reality check on what is the illness talking and what isn't. Of course I realise there is no cut and dry lines to this. Some behaviour is typical behaviour of everyday couples. I have my own weaknesses and imperfections too. I just want to know from others if some of the things I experience with my husband is experienced by others and with some confusion at times.

 

For example, he seems to need for me to explain things differently than I do with other people. I have to repeat a lot, I have to catch his attention. These things are mentioned by many couples I know this. But he can get really upset if he feels misunderstood. He used to go balistic before he was on meds. Now he is much calmer. Sometimes we have conversations that just end up feeling irrational. He gets very into his head a lot. He can spend days enclosed in a room just 'studying' scientific things and reading and getting very much nto his head. But he knows now that he has to get out, exercise and do grounding things. He tends to take things in an 'all or nothng' way. Recently he did a charity walk. He was amazing. But he engaged in really obessive behaviour about it for weeks leading up to it. Some people would just think he is really committed (which he is and that is a good thing) but I see the behaviour as 150% rather than 100%. This part is really hard to describe. He trained and went on walks for this event. Now it is over he suddenly stopped the training and big walks. He tends to grab something and run with it 1000kmph. Then it will be dropped. The same with little habits. He gave up coffee for years. Then he became addicted to tea. Gave that up then went back on coffee. Suddenly went from no hot drinks to about between 4-10 a day (which again is 'normal' for a lot of people!) but I watch this up and down, on and off kind of behaviour all the time. I am lucky in that he has never done anything damaging to me or anyone else. But I do see compulsive behaviour. It stays managable. I just get a bit confused. I can't for a minute think that medication has cured him but it certainly has made our lifes managable and saved our relationship.

 

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