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Relationship ended after lupus diagnosis

Hi there, this is my first time posting a message on a forum. I don't even know if this is appropriate as its not anything to really do with having lupus per se but rather the effect the diagnosis has had on my life.

I had my first flare in the summer of 2015 following the somewhat surprising end of a 5 year relationship. That flare was pretty shocking and turbulent and as for so many lupus patients, I went undiagnosed as a 'mixed ct issue', but since then I have been lucky to be seemingly well controlled with hydroxychloroquine... I then met someone around 9 months ago, and was shocked at myself for how easy and good the relationship felt. I was feeling really positive about life and the future, but during the time of our relationship the diagnosis of lupus came to light with the various blood tests and some discoid lesions giving the rheumys a clearer picture.. and within 2 weeks of hearing about it he ended our relationship over the phone. I've tried really hard to understand this but am struggling to come to terms with it. I couldn't imagine leaving someone I cared for just as they had found out of such a shocking diagnosis. I really don't want to, but I'm afraid I'm losing faith in people not being able to look past this label that I now have. I'm so lucky to have an amazing family/close friends support network but I cannot imagine meeting anyone now, given that someone who claimed to have loved me and was planning a life with me could leave me so easily.

9 Replies

As hard as it is, your better of without someone who can't see further than their nose! There is a special person out there waiting for you to meet them and one day when your least expecting it, it will happen.

It surprises me how many people in this world still 'shy' away from someone who has an illness. It comes down to ignorance.

This forum is a great support not just with our aches and pains but all the rubbish that life throws at us. X


As Chris says - I think that in truth you are better off without someone as shallow as that.

But of course it is appropriate to post about it here - it is part of the effect a chronic illness of any sort has on your life and if you didn't have it the problem might never have arisen. Though anyone who can finish with their partner on the phone doesn't sound particularly worthy...

Hugs xxx


you are better off without him.

someone will come who wont care about your diagnosis and want to support you the best way he can. at the end of the day this is your life and you have to put yourself and your health first.

i am sure that you will meet someone unexpectedly and who will love you not matter what. dont lose faith over one idiot. there are plenty more amazing people out there :)

Stay Strong :)



Hi Ks1989, unfortunately I am able to absolutely empathise with your situation. It may be worth taking a look at my profile and reading my post entitled "relationships." Sad as I am to say it I have been in exactly the same boat as you and have reached out on this forum for exactly the support that you need right now.

My fiancé, yes fiancé, left me on NYE 2015 proclaiming that he wanted to get the best out of life and he couldn't have that with me as I had Lupus. We had had to leave a NYE party early as someone there had a really bad bacterial infection in their chest and I was immunesuppressed. He couldn't handle it and after three years of a wonderful relationship and sharing a home he binned me three months after I was diagnosed. I was 34.

I expect the feelings that you are getting may run along the lines of "if only I hadn't got sick, I should have managed my illness better. How could he say that he loved me then leg it when I needed him the most? I would never have a left him if he got sick, how could he leave me? He has left me so no one else will ever be interested." Any of those sound familiar?????

After a year of analysing and re-analysing my relationship break up it is clear that my ex-partner just couldn't hack it. He was selfish and looked out for himself and always has. I needed him and he ran. Anyone who proclaims to love someone and plan a future with them AND is serious about it does not leave them when the one they 'love' gets diagnosed with a lifelong incurable illness, especially over the phone. I mean, not even to your face? That is inconsiderate, insensitive and downright cowardly.

I had to put up with a lot of abuse after my relationship broke down, of the emotional kind. I was told that it was all my fault. It was 100% down to 'my behaviour'. The behaviour that he was referring to was that I had been sobbing in pain for several weeks.

Eight days after he left I saw my Consultant and it was found that the lupus had attacked my brain, I had inflamed lungs, a partially collapsed lung, an inflammed heart and a bilateral kidney infection. When my Mother contacted him to explain that I was in hospital as a result of these complications and he couldn't come to my house to collect his stuff, he suggested that it was all a lie! Not something a grown adult mature man would do.

I am truely sorry that you are going through this as I really know the pain. I understand your feeling that you will never meet someone again or that you won't trust again. While I am not 'healed' from my experience, time is a great healer and helper. I've been on a few dates, no one special but they all wanted a second date which was a boost to my self esteem!

I am still in a persistent flare and have been for over a year. My appearance has changed drastically, something I have a big confidence issue with. As easy as it is to say that you are better off without someone like him it doesn't stop you from wanting to still be with him.

What I have learnt in the past year, and trust me I have agonised over this beyond belief, is to be kind to yourself. I've always put others first and continued to do this after we broke up. What I should have done is say, "Ok, I've been diagnosed with Lupus, time to put me first and look out for me."

Look after yourself, be kind to yourself, treat yourself, cry, grieve, do something completely unrelated to Lupus, begin to claw back the you that you were before your diagnosis. It's really hard with all the drugs, complications, hospital appointments etc but if you can meet a girlfriend for lunch and can have a giggle, it really is the best medicine.

It's still going to hurt like hell for a long time but this is what this forum is for. You will always find support and friendship here.

Any man who can leave you in the way that your ex-partner has would have had little sticking power anyway. It sounds like he was in it for the good stuff and when the going got tough the weak got going. Imagine if you had stayed with him and were married and there was a different health problem, is he just going to leave you because you got ill. Was the relationship only a goer if it was all fun, fun, fun because that's not real life.

I'm ashamed to say that I still think of my ex everyday and I hold my hand up and say that I still miss him terribly but after 3 years he cut me out of his life as if he had used a scalpel, all when I needed him the most. I know deep down that in the long term I will be better off without him. I think in the long term you will be better off without your ex partner. Try and try not to fret over him or your label as you call it. You are more than Lupus, he has just made you feel no one else will see you for you. That is not the case. He has been very cruel and unkind and cowardly.

Look after yourself and get your Lupus sorted before thinking about any further relationships or heartache, deal with you first and get yourself healthier and happier then you'll be fighting them off!

He's a turnip and no-one needs turnips in their life.

Much love and gentle hugs.



You are amazing , strong, inspiring, thank you so much for this.

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Happytulip, I'm so terribly sorry that all of this happened to you,,, felt as though you were in my head with everything you are saying, but yours and everyone else's comments are 100% right.. In life, lupus or not, you need people or a partner that makes you feel strong and cared for and anything short of that is just not good enough. Thank you so much for sharing your story. With love xx

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Hi, It might sound harsh but you are probably better without him. Men can't really understand what we are going through . But don't lose hope because not all men are not like that. There's hope!!

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I'm sorry for you having to go through this, don't get despondent and untrusting because of one man. Good that he was honest with himself and you. Lupus is a permanent disease and has many manifestations plus a possibility of inheriting genes. A whole lot of people are not the caretaker types for whatever the reasons. Don't see lupus as a barrier, but now that you know it's a part of who you are, strive to make this only a particle of who you are. I'm positive you have all the attributes needed to put on a happy face and live life! I'm on your side as are many others, and you'll be in my thoughts and prayers 😊🙏

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So sorry. This forum is for anything related to lupus, including talking about ignorant, unsympathetic, idiots. He's not worth having in your life. We're all here for each other.

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