I am in the motion of separating from my wife. And it is mainly because she didn't understand that even though I look ok I am the complete opposite and feel like crap. I have never been so low in my life, if it wasn't for my 2 beautiful boys I wouldn't want to go on. Not only have S.L.E., The steroids have destroyed my bones and have just had cervical fusion and also just found out I have Angina and heart desease. So you can see why I am so low. Merry Xmas.

30 Replies

  • My sympathy and best wishes go out to you as I can completely understand your train of thought,not only are we fighting this disease. but in your case and mine multiple other illnesses,but also trying to cope with the fact that most other people have no idea what we are going through.Dont give up,always let your sons be your inspiration to go on and as much as you can try and put yourself first and do what is best for you,this forum is one of the best things I've found,hope it can continue to help you,as there is so many lovely people come on here.I wish you and them an hopefully good 2016,soft fluffy hugs& love. & the very best of good wishes xxxxxxxx

  • Hi gazzasoens

    So sorry to read your splitting from your wife amidst serious health problems!. Tough way to start a New Year!. I'd just like to say that the Citizens Advice Bureau offer good advice for your situation and have a good website which is also a great source of info. They would also run a benefits check for your change of circumstances to see what you could claim and they'd help you fill the forms in.Good luck and as you've said, keep focussed on your sons. Misty.

  • I am so sorry dear, I understand you completely. It is hard for family to understand what you go through. They cannot see it on the outside and explaining only makes them more angry as they often think you are putting it on.

    I have two grown up children and none of them talk to me anymore. They do not understand either. Although I am a quite positive person and never complain, just get on with life, they hold it against me when I took time out to heal when I had flare ups. The silences when I was having a bad time and incapacity to join certain activities... it is beyond their understanding. Whilst on the other hand if I have better times I try to cat ch up with work and chores in the house. They argue that if you are that ill you should not do anything... if not you are putting it on. Needless to say that for an outsider SLE is very hard to understand. So forgive them and move on. To carry the weight of an auto immune disease is hard enough, don't make it harder for yourself. Be kind to yourself, take your meds and take extra vitamine D.

    Eat healthy and focus on the good things in life. If you let yourself wallow in pity you'll only waste the days of your life that could be of meaning. I don't mean to sound harsh and I certainly don't want to make you feel guilty for feeling low, just want to give you a well meant nicely kick in the behind.

    Those that do not want to know or don't care .... don't waste energy on them , you need that energy for yourself.

    Those that are selfish and only want your attention when it suits them, are of no use, love and affection needs to come from both sides.

    That leaves you with only people that genuinely care and are worthy of your love and energy. Look around and count your blessings, even if they might be small. There is always something in one's life worth living for.

    I open my eyes every day as if I am in a new chapter of my life. Anything unpleasant is in the past, anything new is welcome. I tend to use the memories as guide towards development. Like building a house. If you had cut a piece of wood wrongly you know now you have to measure twice before you cut to avoid the mistake. to name but one example. Same with people ... if you know that one action has had a bad reaction, avoid it next time.

    This is not fail proof, but it makes you better prepared to social interaction than anyone and in time you'll be an expert.

    I wish you a very good NEw YEar... and hope for the best moments you can have xxx


  • I'm of a slightly different opinion to Morlobach. It's one thing to prune friends who turn out not to be real friends - but another matter with family. I think those you love need educating about lupus and the way it impacts on sufferers - specifically yourself. Apart from anything else they need to know what look out for themselves. I'm sure they would also regret not having the opportunity to learn how it is for you as they grow older.

    If we isolate ourselves from our families then they continue to be uneducated and you inadvertently condone their prejudices about living with chronic illness. Even if your wife can't grasp this, your sons need to understand that you have a disease and that its effects on you are very wide ranging. They need to know that, although you can't always be there for them physically, you are there in spirit and love them with all your might and mane.

    If you don't fight hard for them to understand as they grow older what lupus is and how it impacts on your life - then the disease destroys you mentally by destroying this most important relationship.

    Your sons need their father emotionally as well as physically. Could you perhaps ask your wife if you can go to counselling with her so that your children don't lose their respect for their dad and she learns what she needs to learn about invisible illness? Failing that then could you see your GP ASAP and ask for psychotherapy/ counselling for yourself to help you communicate and maintain a positive relationship with your sons - despite the break up of your marriage?

    Personally I would never allow my adult children to dismiss me from their lives simply because I'm unwell. Part of their upbringing has been that they learn to care about people who are disadvantaged by what life has thrown at them. The idea that they live their lives without considering invisible suffering would distress me because my relationships with my sons keep me going when life is tough and also give me reason to stay positive. So I try to explain, without banging on too much, that each day brings different hurdles for all of us but for those with autoimmune diseases it's a very particular and ongoing battle. I'm not sure they always understand and maybe they will look back and consider me to have been a lazy, bed ridden mum for a lot of the time. But hopefully they will also understand why.

    Best of luck and try to not to allow self stigma to creep up on you in the form of self pity. Prepare to do battle to save your relationships in whatever way you can. Physically you need to save your energy for yourself but it's also important to have reasons to go on - and you have the best of reasons with your two "beautiful sons". X

  • I totally agree with you, and believe me I tried 22 years, but I failed. I have done everything I could to educate them and want to be so badly on their lives I ended up being taken advantage off and abused. IN the end I have to move on for the stress was making me more ill. Sometimes it's better to leave it the Lord's hands. I haven't cut them off.. they done that all on their own... but I hope one day they will get some sense.

    I hope Gazasoens can keep the bound with his children I will keep you in my prayers my friend.

    Merry Christmas all and a Happy New Year


  • I hope you don't think I was having a go because you said the relationship has broken down between you and your adult children. I didn't mean to sound judgemental - I can think of examples where good, loving parents have spawned unpleasant and uncaring offspring. There are two sets of genes plus many more through our ancestors that go into each individual - not to mention the other parent and their attitudes. I just didn't want Gazzasoens giving up on his children when they are still young and obviously mean the world to him. Best wishes for the new year. Twitchy

  • Its a hard one Morlobach, my children are grown and care about people but not me, long story. My problem is with my husband I can't stand much more of the sarcastic remarks about my sleep patterns. I don't sleep through the night as I have to use the loo a few times and my bladder does not work so i self catheterize. By the time I have done that I am awake; so obviously I come crashing down later.My husband thinks I am very lazy, if I try to talk about it he says he has problems but he doesn't feel sorry for himself. I don't know what to do

  • Oh dear I feel so for you... It's ignorance and inability to accept the condition. I have seen it experienced it got that T shirt too. What can you do? Not a lot I am afraid. Some people are unable to deal with the illnesses and conditions of their loved ones. some are frustrated they cannot do anything about it, some are frustrated they cannot have the life they had planned with a healthy partner. It takes a lot of courage to become a carer and partner of a partner with an auto immune condition. Not everyone is born with a caring gene, and often the fact they have to pull not only their weight but equally chip in for the lack of energy of their partner gives them a feeling of injustice. It may happen that they refuse to accept reality and it is thereby easier to use humour ( even satire) to express ones feelings. It may not be meant nastily and they may not even be aware it hurts your feelings. What you could do is try to talk about how you feel and more specifically how THEY feel. do not ignore their feelings. We as Lupies know what we feel but that does not mean our partners understand what we feel and know how to deal with it. My partner had some real hard times coming to terms he had to help me getting dressed. Eventually I hired an outside PA to take the pressure of his back. In the mean time you have to consider that each individual is different. That is for the healthy partner the same. In the ignorance of how your condition affects you mentally and physically he might utter the word lazy. I have heard it many times. Lazy is a defence word, and perhaps he uses that word to badly express to you he finds it unfair he has to do more than you... or do some of your chores. Again you have to talk to come to a solution and if it is indeed a case of too much weight on his shoulders you need to find a solution. Do not expect your partner to be your hero.. he is human. Contact the council for extra help, use some of your DLA towards outside care to name but 2 examples. Direct Payment could help you.

    In anyway there will always be people that refuse to acknowledge the condition and prefer to see it as excuse to do less. This is not just for us, it is the same with children that suffer behaviour conditions or conditions in the spectrum of authism. They too find themselves subject of opinionated people and judgemental people. YOU cannot change the world on your own , and some people are unable to adapt and change, but if anything can be done is communication. Talk talk talk , not just about yourself but mostly about how they feel and how you can steer the relationship into a better management. Dealing with an auto immune condition is like managing a company with several employees. You have to set strict structures and rules. Only then you can have a smooth operation. IN relation to your children I cannot help I am afraid. Sometimes they revolt for they again find it unfair they have a parent that could not do what they want and see examples of other parents. It's mostly immature resentment and you can only hope that in time they will endure some problems themselves that will make them think back about how selfish and uncaring they behaved. Until then , stay nice, try to keep contact even if it is only a birthday wish and hope that time soon changes their mind. Do not force your feelings upon them, but listen to what they say ... share sporadic information related to your health but do not swamp them, it will push them further away. I wish you the very best and a big hug for the new YEAR


  • Thank you so much for your wise words I wish you all the very best xxx

  • I have been on prednisone for over 2 months and now I see what people mean by bone issues. mine hurt and the doc is monitoring them, as well, I have to be careful not to fall and break something. im weaning off the steroids as I type, and in a month I should only be on only the Plaquenil and off steroids. then i will focus on my kidney issues that will be more long term.

    so I have to ask you, how long have you been on the steroids? my doctor says 3 months maximum to avoid other issues. but this whole time the doc also gave me adivan to balance out the steroid emotions and it worked. maybe you need a little break and get some adivan. some people abuse it, but I found only 1 pill at night levelled me out emotionally and physically.

    the philosophy and methods I use to stay on top of life and feeling good are lots of guided meditation, and meditation using healing beats of background music. both easily found on the internet. My philosophy is that this is not our final stop, this is a place we come to experience and learn about challenges. the more challenges, the more blessed we are, and there is nothing we cant accomplish when focused positive on issues. that's where meditation helps.

    As for other people, there are generally very few people in our lives we truly connect with. many people get together purely for convenience, companionship, finances, etc. but deep down all you need is one good friend that you connect with whereby you can both understand each others challenges in life. lupus is a challenge. and you the student. know that it wasn't given to you to 'tick' you off. but to enhance your wisdom and understanding of yourself and your world around you.

    and maybe wean off the steroids and get on something less destructive to your body, I think steroids are only a temporary drug to help you to the next level. be sure to wean wisely, and good luck!!

  • I've been on steroids for 20 years. They are still trying to wean me off them.

  • 20 years? and the doctors allowed this? why so long?

  • Not really sure, I am only just questioning everything. I used to just take there word for it. So will be asking why I can't come off them now.

  • Hello dear, have you tried letting her know that your not ok. Having SLE is complicated enough to add to all the other things. I too have AVN all bcos of steriods i am due for a surgery which will involve both knees and ankle. My left shoulder is also hurting somuch. talk to her and let her know you are not ok. You can also seek professional help and keep loving your sons and i know that love will keep the light in you burning even brighter. Just look at them and thank God that he gave you adorable sons. Take care and God bless.


  • All of us who suffer can understand and empathise with you.

    Many of us both men and women have the same problem in our relationships because partners and spouses just don't understand.

    Trying to see why they can't doesn't help either.

    We almost split up over my health 13 years ago, but stayed together and we live very much separate lives now which is lonely and difficult at times and doesn't help the condition.

    I am the birth sign that needs to be in a loving and balanced relationship.

    My husband has health problems now, too, different to me and although I do my best to help him, I can only do so much with my own immune problems.

    I wonder if his health is suffering because of how I have to live.

    I do my best to remember the body does want to heal.

    It is just finding what is right for us as we are all different.

    Many have gone down the natural route with a great deal of success.

    I took that route and manage my problems as best I can because drugs don't help me, like you. I, too, was damaged by steroids.

    I found natural healing and kinesiology very helpful and living with a diet that seems to work for me. May be you could find help this way, too.

    All the best.

  • It sounds like you are going through a lot at the minute. I have no useful advice I just wanted to send my thoughts your way. It sounds tough,in fact I know how tough it is when family members don't get it. Hang in there, everything passes and you will come out on the other end stronger.

  • So sorry to read your post and that you are so low. Sending you warm wishes for what I hope will be a better new year for you.

  • people can look very ill and these people get very often discriminated, not necessarily get any sympathy or empathy. No sympathy if there's any disfigurement, for example. There were tv programs on this. Sometimes, totally the opposite, disgusted by or disapproving if you were looking ill. Public perception is that average people generally dislike sickness or illness and purely the association of it. It's essentially ignorance because people get ill all the time but until they get ill themselves, average people refuse to have empathy for people who became ill. Extreme example of this is disablism. Similar to homophobia, these people get attacked or spat at in public places as if these sick people should not be seen and stay home to keep themselves discreetly hidden! Be kind to people who are looking visibly ill, too. If someone's spouse says, you look doesn't necessarily mean THAT.. What they really mean is, "pull yourself together or I won't stick by your side". either you could pass as having some hidden disability or looking 'normal', it does not matter. It's the sickness some spouses simply cannot accept. General lack of education in a society where youth / exterior beauty / health etc are considered to be good and sickness has no room (usually something to keep away from). If you no longer live up to the usual standard, some spouses decide that you are no longer someone she or he married. There are exceptions but sickness is known to lead to rationship breakdown and divorce. Many of us went through this. So you are not at all alone in this. Stay brave!!

  • I am so sorry to hear that. Your at least not alone. They're are many on here that understand what your going thru. If u need to talk,where here!

  • Hi, try to. It let all that you are going through get to you. We all have had trouble with people even spouses that don't understand how we feel and the pain we go through! Try to be positive this is just a step in your life and a start over for 2016! Hope you had a Merry Christmas and have a Happy New Year and try to not over do it! Gentle hugs 🙂

  • So sorry you're going through this, just focus on those beautiful boys of yours, and hopefully next year will be better for you. Take care

  • It stinks doesn't it! Get as much help as possible - see GP re psychotherapy/medication/family therapy and info on organisations that can help. You're not alone.

    My ex couldn't cope or understand; the term lazy was used often. He became my biggest stress so I illiminated it by separating. Fortunately SLE hasn't turned me into a victim so I still stand up for myself, when I have the energy :-), against family, friends, doctors and anyone else. Guilt is my biggest problem.

    Anyway, my children are my reason for living, now aged 10 and 14, I separated from their dad 8 years ago and there's been no one since. But at times I think they'd be better off without me which is when I'm in serious trouble. I've been diagnosed with an organic mood disorder due to lupus so I'm on sodium valproate and prozac which help keep me balanced but a bit spaced out; adding to the brain fog. When I do get in trouble though I have the emergency psych team to help me so I only burden them and my mum who'll come and stay for a few days as she lives so far away.

    Sorry I've waffled on. Depression is a symptom as well as an outcome of lupus so get help. Your depression may not be chronic but talk to your GP anyway.

    Look for the silver lining! xx

  • Hi gazzasoens,

    I'm very sorry to hear that things are not currently working with your wife. Have you provided her with much information about lupus? Would you both consider couples counselling to try and work through some of these issues?

    Have you discussed your current low mood with your GP or consultant? They may be able to offer some additional support. We have a leaflet about lupus and depression that you can download at It includes information about a variety of support services that you can access if you would like somebody to talk to.

  • Hi so sorry for your situation. I read a lot about people and family not understanding. And it is beyond me how people can be so cruel. Just because you can't see an illness doesn't mean it is not there. I must be lucky because I have no problem with people understanding my illnesses and I have a lot. But you just have to take every day as it comes and don't bother what other people think take care and I hope some day you get the understanding that you need xx

  • my partner spent 6 years with me, 4 of which were a lot of doctors and hospitals and some pretty hairy experiences with lupus and menopause (which did not seem to mix well together) we separated. I actually told him to go because I could see the stress was really starting to beat him down. we talk lots and support each other, but being apart has actually lifted stress off both of us. I was stressed to see him stressed and vice versa. we tried counselling, and it might have worked, but we both worked, and he was away working mostly, and the lupus does not wait for counselling sessions. after he left, we still worked on being 'friends' and backing out of each others hair (so-to-speak) it has worked for us. he learned a lot more about lupus while being gone and has lots of doctor care for his problems that also answer his questions about me, and what I go thru. I and I have found the space and time to understand his issues (slipped disc) if used properly, separation from your spouse can be a bonus for your support system AND your relationship.

  • So are you together or still separated.

  • Thank you to everyone who replied. So nice to have encouragement and understanding. Many Thanks.

  • we are still separated, we are about 3000 miles apart. but we talk like friends and have found a way to respect each other again and listen to each other (via phone) I have my own place and he has his own place and that helped to divide our energy. it also separated our frustrations and anxiety and all the pain we shared. that's the good part. now we can actually lean on each other without being a crutch or being stressful to each other. we don't have any kids together but he is like a father figure to my daughter and has continued communicating with her. at first she was confused, but now she senses its better this way

  • OH where does he live now. We have kids which is always difficult.

  • we are in Canada, Im in Saskatchewan and he is in Ontario. when you and your ex get more settled with the situation, the kids will follow suit.

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