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Hi Everyone, I'm hoping you are all having a good day. This post is quite personal and it's taken a lot of courage for me to write this. I'm usually OK with all the medical stuff but the emotional side of things I tend to find a lot harder. It's a longer post but if you can help I'd be very grateful.....

I was wondering about people's experiences with relationships. I am really struggling to get over a recent break up and can not stop blaming myself and Lupus for it. I was with the guy for 3 years. Our first year together was amazing, we were so happy and we were planning a future together then suddenly Lupus struck. It didn't come on slowly, it was literally overnight and my life totally changed. I was hospitalised for a very long time and thought that would be the end of the relationship. But no, my partner stepped up, moved in to look after me and looked after me so well for the next 18 months. We often discussed marriage, children and I was slowly preparing to return to work. Things were good between us. Then I picked up an infection and had another flare. Suddenly I couldn't use my hands and had to rely on him to cut my food up, help me dress etc. He seemed OK with this at the time but I wonder now if resentment was beginning. Slowly I started to improve again. There were a lot of tears from me due to such intense pain and I openly admit that I was feeling depressed and probably became desperate for reassurance, a hug or emotional warmth. In December we went away for a weekend with friends but we had to return early as one of the people we were staying with had a chest infection and flu like virus and I was vulnerable to picking it up as I was immune suppressed and had been told to avoid any bugs. My partner was supposed to contact the people we were staying with before we went to let them know this but forgot (or just didn't) . I wouId have never gone if I knew someone was ill as I was expecting to stay with them for 3 days. I would have contacted them myself but I didn't have their details and was assured by my partner that he would do it. My partner was furious that he had to leave the "party". On the way home he ended it in the car, shouting at me and telling me that the relationship was over. He said I was full of s*** and he said he wanted to be totally selfish. He said I've only got Lupus and I'm on medication now so should be better. I think he thought I was making the agony of the headaches, joint pain etc up.

This happened on New Years Eve, I am still devastated because until our last few months together we seemed so happy and so strong despite all that Lupus had to throw at us. I guess the resentment just crept in and he turned on me and hated the situation. It was like his patience had expired. The man who I saw that day was a totally different person to the one I had known for 3 years. The sudden change was very alarming. The sad thing is that 14 days later, I was seen by my consultant who started me on new meds and I am back at work and doing so much better.

I miss the person that I knew so much. They refuse to communicate with me at all and became quite nasty when I last spoke to them which in my experience is totally out of character. It's left me feeling hurt and vulnerable and as my body has totally changed since lupus (most of my hair has fallen out, I've put on 2 stone and have a moon face due to pred). I feel like I could never attract anyone else and basically that's the end. I'm 35 and was expecting to get married this year and hopefully be on my way to starting a family but that dream has now gone. I'm struggling to drag myself through each day and just can't shift this overwhelming sense of sadness and loss. I blame myself for pushing him beyond what he could handle. I keep thinking that if I had managed my Lupus better then he would still be here.

Has anyone else had an experience like this? I am usually a very positive ambitious person and I really want to move on from this but just can't seem to. My self-esteem is in its boots. I probably need a massive kick up the butt but if anyone can offer advice or share an experience I'd be very grateful.

13 Replies


I am so sorry, I can only imagine how how you feel. I will admit not only are our medical issues hard on us but, but on or wives, husbands, girlfriends, & boyfriends. Not only do our lives change but theirs do also. It takes a special person from God to deal with our issues.

I am one of the lucky ones, I am a guy, my wife and I have been married for 36 years. 2 years ago our whole world was turned upside down. I had to come out of work, things did and places we use to go most of it ended. However my wife never once complained, other than she said at one time, I wish we had if done (whatever it was) because now you can't.

I have a lupus rash on my right foot, I have had what ever it is for 2 years. I have been barefoot for 2 years. Even tho I have to be barefoot everywhere we go and everything we do, she does complain one bit. Now I don't want to wear shoes but, that is another story.

I have lost all of my body hair from my neck down. I have no chest hair, no hair on my legs or feet, and yes, I have no pubic hair.

I get rashes/blisters from lupus all the time all over my body including intimate places. Laura still takes care of me, she puts cream and ointment on any and all rashes/blisters regardless where that are on my body.

Don't give up God has made someone for you, you may not have found him yet but, they are out there! When the time is right God will put you together! You never know when, and you never know where!

Live your life to it's fullest it will all be all right.

Never give up!

There is a photo of Laura and I on my home page, if you would like to see, also some photos of rashes/blisters and of course me in the garden barefoot.

Thus the name from Coco from this community.

Not only do I have Lupus (SLE) but I also have COPD & malignant hypertension.

Wishing you the best, we are all here for you.


"The Barefoot Gardener"


You don't need a good kick in the butt - you need a big hug and a much nicer person around you than he was. I know it is going to be difficult to do but you do need to confide in your GP and ask for referral for counselling as well to help you move on from him. Though I have no doubt it would be quicker if you can afford to pay. On the other hand - you are clinically depressed, perfectly understandable in anyone with a chronic illness who has been through this sort of bereavement, for bereavement it is, and you do need the help.

Of course you feel as you do - you've had the carpet pulled from under your feet in a particularly hurtful way but in some ways it is perhaps as well it happened when it did and not later though I know that doesn't help you at present either. Your partner promised to do something that mattered a lot - and he didn't. So he blamed you. When it absolutely WASN'T your fault. The signs are - I would say, at least - that he now feels guilty but can't climb down and apologise.

I'm sure others who have had similar experiences will be along to tell you their stories. In the meantime though - no blaming yourself. Even if there were any "blame" to be directed at you, it takes two to tango so he must take his fair share of the "blame" - it's in quotation marks because it isn't a good word but I can't think of another at the moment. Try not to get into the blame game - either way.

When you are in the pits - the only way is up.


Thanks for sharing Tulip. I know how difficult that must have been to write and totally empathise. I'm incredibly sorry your hopes and dreams have been crushed so brutally but you're still relatively young so please don't give up hope of finding happiness elsewhere. Clearly he wasn't the right partner for you. Big hugs xxx


These wonderful replies from the others say it all...am so glad you're here, happytulip...and am so glad you told us about this...and I'm so glad these deeply thoughful & sincere replies have come in for you...I'm sure your post will help many others who haven't found the courage to share their stories...I have no doubt that many of us have similar tough times with relationships...I certainly have had my share....am sending you a big gentle hug...+ many more of the same

🍀😘🍀😘 coco


it is hard to let any body in our lives we dont fully understand lupus how do we expect any one else to i have been alone for 6yr but now am looking for someone who will see past the lupus we have to keep fighting for our own sanity

there will be that caring guy out there have faith i am glad your darker days of lupus are better for you

remember he was selfish you deserve better and will get better than him

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Hi Happytulip,

Your post really touched me. I was in a similar relationship 2 years ago and one day he just flipped and said some really awful things out of nowhere. From where I am now, I know that must have been building up for some time and he needed them as excuses to be angry at me to make himself feel better, instead of dealing with his guilt that he was messing up. Do you know what? You deserve better than that. If he couldn't be with you through your illness and want to protect you from getting sick and put you first, then seriously, you really are better off without him.

It's natural to be looking at reasons for it all because you're hurting but the fact that he is still being awful to you means he has built up a wall to protect himself from feeling s****y about himself, like he should do. He should have been honest with you and he obviously wasn't.

Having any long-term illness is bad enough and it's normal to feel like we're burdens or better off on our own but it doesn't stop you from being who you are, from being a person who deserves to be loved, respected and cared about. We deserve to have people that understand what our illnesses do to us and support us and give us what we need at our low points. That's really not that much to ask and I am in no doubt that you would be more than willing to do that for someone you loved.

It's great that you're doing better now and do you know what? He's missing out on that and you can use that feeling better and channel it into making you happy. You need to focus on taking care of you and doing things that will boost your self-esteem and help you get back to making yourself your priority and then who knows? Someone worthy may come along .

I'm 33 so I understand what a huge upheaval it is to have your life turned around like that when you thought you had it all straight but 6 months from now, you will probably feel very differently. Don't let this experience lower your standards or expectations. The problem was him, not you. I hope you can hear that.

Feel free to message me if you want to talk some more.

Fresh start. Be happy.

Friars xx


Hi Happytulip. I fully agree with all these lovely responses which are all aimed to cheer you up and tell you that things will get better.

I haven't been through this particular kind of bereavement yet thankfully although I've had more than my share of sudden loss/ tragedies. My eldest son was totally dropped by his long term (five years) girlfriend in September. There was no warning and no explanation. He is mildly autistic (Aspergers) and has severe eczema all over him. He was devastated very much in the way that you describe for yourself. But somehow he pushed himself on and dated a couple of women just to prove he wasn't as ugly and unattractive as her actions had made him feel.

He's now going round Australia with a backpack. He has half his kit bag with oral steroids, diazepan, ointments etc.

You deserve far better and I suspect he knows it deep down and won't communicate with you because he's ashamed. Hang in there and hopefully someone or some thing wonderful wil come your way soon. X


I wrote a post some time ago, I have a wonderful husband of seven years standing, after a horrible previous divorce and a decade on my own. I can't fault my husband's caring, but it is now entirely sexless and I see him as my best friend rather than my lover. I miss the lovemaking more than I can say, as I still find him so attractive, but can only think that I am a "patient" rather than a wife, in his eyes now. I can live with the situation, because I love him deeply, but I hope you find a man deserving of you. Xx

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Hello lovely named person. I hope you reclaim it today.

Self esteem. Hm a bit of a bugger that one. But lovely people, like you, should not have issues! How do I know you are nice? Because only mud sucking bottom feeding people have no issues. They are never to blame, it is always someone else's fault for their lack of integrity, backbone, failure to think things through, to assess as an adult, to commit. Sound familiar? People with immense selfish egos are only dedicated to one person... themselves.

You are coping so well, on your own with life, with its ups and downs and its kicks in the teeth. With this blessed disease with all its many symptoms. Symptoms are a list of conflicting, confusing things each with its own dance. We tango, waltz, barn dance, jitterbug simultaneously through each day. Let Craig Revel ego try that!

Everyone is trying to tell you to believe. In you. It is hard I know.

I was well and happy and had a beautiful 9 month old son when my husband of 2years and... nine months walked out. All my fault etc. It took me a while to realise my husband could not take being second. My attention had to be shared. Would I have wanted him to stay? No. 100% no. I had 20years to bring up a wonderful man who now has a child of his own. I would never have wanted a weak, selfish man to have a part of my son's life. My 20 yrs was a long time. You will not have to wait that long. I met a man who is kind, loving and knows what commitment means. He knew the definition. He honours his vows. He is paying for "in sickness" big time without complaint and with love.

First husbands loss? Years of joy and laughter and a special bond that my son now nurtures with his son. Love doubled and redoubled.

Please believe. Your are a strong resilient woman who can cope with life and pain and dosy docs and waiting for appointments, and frustrating test results. You are a lovely person in a difficult position. It is hard. We here all know it is. But you do know that one of the international criteria for a diagnosis of Lupus is that you are a nice person. Don't you? Bottom feeding slugs have no idea!

Cherish yourself. Look up. Look outwards. Get an interest, get involved in something. Get a budgie! Someone else to care for, to love and to think about. I suggest a budgie cos a Rottwieller may be a step too far!

Bottom feeding egos are not worthy of your thoughts. A total waste of your precious energy. Don't waste it. Invest in something, anything that will allow you to reclaim your lovely name. And think! Tulips have faded now, but their bulbs are being nourished for next time. Like you.

I didn't believe I would ever find a decent man. I wasn't looking, when wham, up he popped. If you are out in the world in however a limited capacity at times, loving and caring for yourself, someone will love and care for you too. Believe but dont be a slave to it. Treasure yourself and so will someone else.

We support you. We understand, you are not alone. Come here and share anytime. Keep us up to date with your adventures. Private message me, or others who have offered anytime. You will be supported. Remember, I told you, only nice people get Lupus.

True you guys?

Take care. Be courageous. Love and look after yourself.

Bottom feeding slug egos? Who? Never heard of em

Much love and gentle hugs




Hi Everyone, I just wanted to say a MASSIVE Thank You to all the replies. It has been so overwhelming to hear how kind people have been. During these past 6 months I have been tormenting myself daily, questioning myself about what I could have done better or differently to keep my ex-partner happy. I was under so much pressure to be well and healthy as we had often discussed marriage but he had told me that I wasn't well enough to get engaged yet or that I wouldn't be able to cope with a wedding. What could I do?? I was in the middle of a very big flare!

I've spoken to my family about this and they all think that he was messing me around, was only ultimately out for himself and putting his needs way over my health. Although they have told me this, it can be difficult to take from family members as they are supposed to say the right things. Since reading your wonderfully encouraging replies I am now beginning to see the crack of light appearing that may just be common sense. For some reason, it is easier to hear and to take on board the advice and help from this forum. Maybe it's because we all have this crappy illness and we know how it can feel.

I've read the replies many times, especially when I've felt vulnerable or even when I've been feeling lonely and missing him. It has helped so much so thank you again.

As I said in my post, I am back at work, although part-time. My confidence is still pretty awful and my self-esteem really is in my boots but I guess that will eventually pick up. You know my ex used to comment on my hair loss saying how he preferred it long (I had to cut it all off due to aloplcia and he would comment on the body hair growth that was a result of my steroids. Even better, when I got sad and was crying, mostly due to severe pain he would ask "do I need to take you to a mental hospital?". Nice eh? All I wanted was to be held. With the clarity of space I can now see that at times he was quite cruel in my time of need. I have since learned that he inherited rather a lot of money several months prior to leaving me. He never told me this which hurts so much more as he would watch me anxious and in tears about how I would pay the mortgage, knowing well that stress flares Lupus.

Anyway, I am sure he is enjoying his money. He has given up any serious work (he hardly worked anyway and was quite comfortable doing the bare minimum). Life has to be all fun and games for him and it seems if you aren't fun anymore because you are tired or in pain then you get discarded. That's not life. That's not real, it's fantasy because you never know when life is going to throw a big curve ball at you.

Thank you all so much for your support. It is still so very difficult and it still hurts everyday but with the support of this forum I do feel just a tad stronger.

Best wishes to all



Excellent progress happytulip


Keep in touch



O mG! He was a peach wasnt he!! I found myself left at 35 with 3 kids under 4 my husband told me he was gay and i still loved him.I thought my life was over and i had to get an aids test in 1992 .Way back then there was so much stigma , and my poor babies needed me to be strong.However i ended up marrying again to a childhood friend we had another child together and we are still together.My illness came within 3 years of our marriage in 2000.I had just qualified as a nurse ( yep i went to college 3 afternoons a week ,did a levels in a year and then started a degree in nursing with subsidised childcare.it is amazing what you can achieve im still very ill with severe ME and fibromyalgiaand a few other things to boot.People dont change really ,and what you see when the chips are down is usually the stone col truth.You were too good for him! Really you were.He had money but let you worry when he could have helped or loaned the money to help you until things improved.He was looking for a way out and thats why the out of all proportion blow up seemingly out of the blue.Then he couldnt even be civil once the breakup had been completed.Imagine if you had married him and had a sick child? You can bet it would not be party central at your home if that happened.He was a flake hiding behind lies and superficiality.When your appearance changed due to medication ,he then cruelly tells you he preffered you another way?? what he couldnt cope with for 18 months my hubby has coped with for 15 years.He works fulltime ,does the cleaning and cooking everything because i am bedbound 24/7 and have been for nearly 8 years.You are not the whole sum of your illness.Nobody is.I always remember a wise lady telling me at 16 that we get what wesettle for .She was so right.You are amazing really to even desire to love someone fully given how hard your life becomes during flares.a kind gentle man will demonstrate by his actions his true feeling for you.Actions speak louder than words is true .Beware of glib anybody.... surround yourself with people who care ,make friends by joining clubs , libraries, volunteer one morning a week.See how strong you can be.How worthy you are of humane decent treatment . Ever again give away all your power to anyoneOnly doormats do that .Love yourself first!then look for love if you still want to.Remember we all get older with every day that we live, looks fade , but a gentle kind heart never stops loving and supporting others.You got taken in ,possibly because you feared the body clock ticking down to have kids in time.Ivf can work wonders ,adoption is always an option ,who knows?? Just remember you get what you settle for ,and NEVER settle for less than you yourself are willing to give.Love yourself , be whole without a man , then any relationship will be a happy bonus. But most importantly you will be putting out the correct vibes those of a strong woman loving kind and yes ambitious ,but someone who is to be valued not lied to ,abused in any way ,or dumped at the first hint of adversity.Good luck d Godbless

1 like

im so sorry . i too have had the pain of my hubby of 25 yrs just tell me hes done only 2 months ago. he had bern amazing the whole time i had been ill even though i have been bedbound through severe ME for nearly a decade. He said he had nothing left to give and he was so sorry but my heart still broke. Hes always been my soulmate since i was 15 im 53 now . he was my best friend as well. Its so hard i still cry every day . he too was as if a switch was thrown. he is still civil but i could be anyone. all trace of our former life together has gone . he doesnt even smile at me anymore.I dont know what to tell you except it isnt your fault. mone of us asked to get ill and stay ill. i understand also that some people just have a finite ability to cope with us and our needs . Do not be hard on yourself. Instead live as well as you can and get back out there. somewhere there will be someone you can love again. i know it. wishing you all the very best . x


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