Topic of the Month: May - Discussing lupus in a relationship

[Paul_Howard]

A chronic illness can have a profound effect on a relationship and lupus is no exception to this. Perhaps one of the greatest issues around lupus is that in so many cases there are no visible symptoms, in these cases communication becomes much more important.

Perhaps you are not currently in a relationship and don’t know how best to discuss your condition with new people? Maybe you’ve just been diagnosed and you and your partner are trying to understand it together? You might be a carer and can’t always tell how best to help your partner. We’ve asked our community to provide their experiences, good and bad, so that you can perhaps choose the best way for you to approach the subject.

The Lupus Foundation of America produced a fantastic article on lupus and dating which you can read here - lupus.org/webmodules/webart...

There is also a fantastic article by WebMD, ‘Chronic Illness: 7 Relationship Tips’ which you can read here - webmd.com/sex-relationships...

Here are some of the experiences that lupus patients shared with us;

- “I have a brilliant and understanding husband. We have been together for 18 years. I was diagnosed January 2012 (so very recent) but like most patients I had symptoms long before diagnosis.

My husband has been with me all the way and during all my bad times. Before diagnosis he has listened to me and let me cry, get angry, shout and pour out all my troubles night after night. It has been a long journey but it has brought us closer together. I could not have done it without him and my children.

When we found out, he was with me at the hospital and took it very well, as he now had a name to my symptoms and we could move on and finally deal with it. My husband’s reaction was positive. He said nothing negative. He would not believe that life was now over, just different. He knew he would have to help more around the house and take over more chores (I laughed at that one). He has never once complained and I feel very fortunate. I have kept nothing from him and he knows everything and supports me when I’m down. He loves it when I am happy. I feel very lucky.”

- “I was engaged to be married and I broke it off because I realised the one man that should have stood by me didn’t actually want the ‘hassle’ if I got ill! It was hard, but it was for the best. In time the right person will come along.”

- “I have had lupus for 24 years. In the beginning it was hard for my husband to come to terms with it. I think that the tiredness didn’t help because the sexual activity wasn’t brilliant. However, over the years my husband has become more understanding. He now realises that in the afternoons I need to take a rest and now he’s happy to care for me when it’s needed. I also think that because we have been together for 26 years, we have had to work at it. It has been ups and downs. He now gets angry with people who say I look fit as a fiddle and I have to try and calm him down.”

- “As a young single woman of 24, I constantly worry about when I should tell a date that I have SLE. I was diagnosed a week before I turned 21 and my boyfriend at the time wasn’t the most supportive. I cried down the phone to him on the day I was diagnosed and he said nothing much apart from, ‘I hope you’re OK’. He broke up with me a few months later, no explanation. Since then I’ve always thought my lupus might have had something to do with it. Since then I’ve always been open and willing to talk about my condition with men that I’ve met, so they understand what I go through, and to hopefully prevent this situation happening again. It’s just difficult to decide when to tell a person you like about this.”

- “I have always been honest with anyone I have been seeing because I have so many hospital appointments, it would be hard to hide that and all the drugs I take. I have told boyfriends from day one. To be honest, this has never been a problem. My hardest problem was admitting lupus was beating me, rather than me beating lupus. Just be honest with them and tell them everything.”

- “Before I was diagnosed with lupus I had a diagnosis of ME and my husband always found it really difficult to understand – he couldn’t accept why I was always tired and complaining of aches and pains. I tried to pretend that I was fine and made his dinner. This didn’t go on for long before I had a bit of a breakdown and ended up on anti-depressants. Our relationship was, understandably, rather rocky at this time. Eventually, I was diagnosed with lupus and this helped him to acknowledge that I was really ill and he looked at some of the lupus leaflets. He still struggles with how extremely restrictive it is on our life, but he had completely turned around his attitude and now he’s soooo understanding and loving…He now helps me by explaining to others why I can’t do what they ask and he helps me to pace my life. Recently we watched the LUPUS UK DVD together and this marked another step towards awareness and understanding from him and I’m grateful for this. I feel so lucky to have the love and support I need in my relationship – and we can still laugh together about life.”

- “Since diagnosis I have always just been upfront with people I meet about the fact that I have lupus. My current boyfriend/partner totally accepted it as part of me being me, right from the start. Initially I got to know him as a friend and he just knew that I had lupus. I gave him a brief intro – that it made me exhausted and I had been retired through ill-health because of it. I left it up to him to ask any questions.

Once we decided to be together in a relationship I pointed him towards the charity LUPUS UK, who have excellent info and this really helped. I left it up to him to do what web research he felt he needed, but I would always be willing to answer any questions he had. I would also update him from time to time on how my symptoms impacted upon my lifestyle, when I felt it was necessary. I slowly learnt not to be afraid to be totally honest about my bad days and ask for his help if I needed it. I think the right partner will accept your lupus, but you also have to accept that it can be difficult for everyone who cares for you to understand and cope.”

We also had this experience shared with us from a carer.

- “From day one of meeting my partner I researched lupus to get an understanding of the illness. It pointed out the short term/long term effects of the illness and medication, but no matter how much reading you do, you can never get a true understanding of personal experience (many ailments) or the fatigue experienced by the sufferer. There is a constant up and down in energy levels.

I love and support my partner 100%. Sometimes I struggle, especially when my partner is tired and I feel unwanted/that I get in the way. All I want to do is help. This is when communication is necessary. It’s not the finding out, it’s surviving, working at a future and being there for each other. Together we will fight this illness”

We apologise if we didn’t use your experiences in this article. We had a great amount of feedback and unfortunately there wasn’t enough space for everybody. If you have an experience that you’d like to share then please feel free to leave a comment below.

If you or a partner has recently been diagnosed with lupus and you are looking for some information to help improve your understanding then you might like to have a look at our DVD and handbook. They are available for £2 to cover the postage and packing costs. You can get yours from - bit.ly/z0Jffw

LUPUS UK also has a wide range of literature available. If you’d like a free information pack, please email [e-mail]

[Jinny]

Very interesting to read different peoples experiences,,helps me understand so much more!! The one thing i am learning faster than anything is,,I have to accept this disease now,,it will be here to stay so might as well learn to live with it,and try and get along with it too.x

[Looby]

I liken it to "treading water...sometimes surfing...sometimes overwhelmed by a huge wave.... having someone there to share the load is a life-saver, and sanity preserver.

Since joining this Blog site, I have been amazed how some people cope - especially those who live alone, or have children to care for. I doubt whether I could manage on my own (it is my greatest fear, actually...). My husband is a rock - but not an angel. Like most couples, we have our "clash" days - but he is generally really tolerant and understanding. It is a two-way partnership - and he has days when he needs my care too. He sometimes reads the Blogs too - and it is all helping both of us to realise the extent of this wide-ranging illness.

[Petey]

My husband was my rock and my everything. We encountered a few large issues within our relationship a few years ago which have left scars. When I was diagnosed I knew in my heart the relationship hadn't recovered enough to be strong enough to survive. The extreme tiredness was a huge problem to my husband who saw this as me withdrawing from him and his needs not being met (not just sexual). The depression was awful as Citalopram made my libido disappear. I found after a recent bout of pleurisy my husband who works away showed no concern either on the phone or on his return home. The shift in dynamics and the way the illness has affected me as a person has made him believe the old issues still remain. He doesn't see the separate issues. He has consequently walked out in a whirl of resentment and anger. I am truly devastated as he was my world. I know lupus has its effects but I am quite upset that my husband didn't understand it enough to know the difference between illness and relationship problems, or strong enough/caring enough to battle it with me. I became aware of his likeliness to leave when I asked him to watch the Lupus UK DVD which he fell asleep during. He told me he'd watched it when he'd walked in at the end of the last interview when I was watching it. I asked him again to watch it, saddened that I'd had to ask, and again he nodded off to the point his eyelids shut and I repeatedly said his name! I am quite disappointed and feel very let down. I couldn't imagine leaving him if he was ill. A fairly new diagnosis and a marriage breakdown largely attributed to how lupus has affected me. Bit rubbish

[scottty]

i was told that i had lupus had 2 hips replacements and after that my relationship breakdown as he couldnt put up with my depresstion as i do cry alot with pain and when you meet someone new and you tell them that you got health problems and it all makes just as bad again