Lupus can have a significant impact on a relationship and many people with lupus have very happy, successful and fulfilling relationships. It would be entirely wrong to believe that because a person has lupus they can never experience a happy and fulfilling relationship or that the relationship that they were in before they were diagnosed is doomed to failure.
Being diagnosed with lupus can put a great deal of pressure on a relationship. It surprises many people to know that it is often the person with the disability that brings about the end of a relationship after they become disabled – they often feel that their partner ‘should do better’ or that they are now ‘holding them back’. This kind of situation is by no means inevitable, but it does demonstrate the need for good communication through the transition period so that each person understands the motives for the other’s actions and understands their expectations and hopes for the future.
Lupus will almost certainly bring change to a relationship – simple physical changes to what you do and how long it takes to do things if nothing else – and you will need time to adjust to those changes and to understand them fully.
“I’ve been with my husband for nine years and was only diagnosed with SLE and discoid lupus one year ago. Our lives have completely been turned upside down, yet he is the most understanding, supportive person who goes above and beyond to help me daily with my illness. I’d be completely lost without him.”
Due to lupus often being invisible, it may be difficult for your partner to understand what you are experiencing. It is possible that they may doubt your illness, believing it is all in your head. This can be extremely painful and frustrating, causing anger and resentment. You may not be able to care for your home or family the way you or they are used to, and that can lead to feelings of depression, and even guilt.
“I told my wife about my lupus from day one and we have had our ups and downs. I sometimes don’t think she and my family understand because I look ok. We have nearly split a few times. Just last year we were going our separate ways and then I found out I also had angina and heart disease, so she stuck by me through it; a triple heart bypass later we are stronger than ever. I don’t think they realise until a flare up or other health issue pops up.”
Chronic illness can often shift the balance of a relationship. The more responsibilities one of you needs to take on, the greater the imbalance. If you have been diagnosed with lupus and you’re receiving care, you can feel more like a patient than a partner. A shift like this can threaten self-esteem and create a huge sense of loss. If your partner is providing care for you they may start to feel overwhelmed and resentful so it is important that their needs and wellbeing are also looked after.
“I told him quite early on, but he recently admitted to still being confused by the whole thing. He feels powerless when I’m in pain and that he doesn’t know enough when I’m crying over blood results etc. I don’t know when the right time to start taking him to appointments is. It’s a balance; I don’t want a carer, I want a partner, but we both know that one day he might have to be both.”
Telling a prospective partner about your lupus
If you have a chronic illness like lupus it can be difficult to know when or how to disclose sensitive information about yourself to romantic prospects. Many people are not very aware of lupus and so the person you are dating may not have heard of the disease before and is unlikely to know how it can affect somebody.
The right time to discuss lupus with a prospective partner will vary between individuals and how comfortable they are talking about their health. Whenever you do decide to tell them, if you need information about lupus we have a wide range of free publications available. We also have some helpful videos available on our YouTube channel.
“I told my partner before we went on our first date. We had been talking for months as friends so I wanted to let him know before we both got emotionally involved. He asked a lot of questions as he wasn’t aware what lupus was or how it affected me. Once we did actually become a couple my specialist gave me all different types of leaflets to help him understand. I’ve always been honest with him about my illness as it’s the best way. There is no point trying to mask something that isn’t going to go away. He’s amazing with me now, and knows when I’m finding things hard.”
“I usually tell them before a date because when a guy asks what I get up to for fun or at the weekend I can’t really lie; my life is work, study, and sleep pretty much. Usually they ask what it is or otherwise have a google and come back saying ‘wow that must be hard’. They usually still want to meet but unfortunately although they have looked it up and have had a read, they don’t fully understand and never probably will. For most people ‘tired’ means an early night and all better tomorrow. I have been single since I first got lupus two years ago and don’t have much interest in forming a relationship because I don’t think I could cope with the constant need to keep someone happy attending family events/friend’s birthdays and dealing with the arguments. It is not worth it for me.”
“I told my partner after about eight dates. He hadn’t heard about it so I gave him my lupus history and how I’d found out I had it – bone marrow failure. He was more impressed about how far I’d come since my huge flare. He did some research on his own and thought he had got it. Then we had our first fight not long after when I cancelled a date because I was too tired to go out. He said ‘ok see you another time’ and I was furious; overreacting happens when I’m shattered. He then came over that night with food and cooked me dinner as he did some more research on chronic fatigue and realised it wasn’t just tiredness and because I didn’t look ill didn’t mean I wasn’t ill. He now fully gets it and is moving in with me in the next few months.”
“I told him on the second date. I wanted to know if he would run sooner rather than later, before I got too close. We’ve been married two years in May and have twins on the way!”
“Waiting too long to tell people never worked; they would always run away when I told them or just by seeing that I was ill…or thought I was boring because of all the food I wouldn’t eat, no alcohol, no sun, and falling sleep everywhere! I took the risk and decided to mention it straight away and it was better.”
As with all aspects of relationships communication is vitally important. It is essential that you take the time to keep talking and to keep honestly exploring your feelings and emotions. Don’t be afraid of the fact that sometimes the emotions you feel aren’t ‘nice’ – you may feel angry, you may feel guilty, you may feel frustrated, you may feel hurt. Fear of those feelings, and denial of them, may do far more damage that honestly expressing them in the moment then letting them go. Trust your partner to understand and don’t feel bad that you don’t feel ‘what you ought to feel’.
“Agree that bad days and outbursts are no reflection on your partner; this works both ways. Accept that you will get sad, angry and frustrated with each other as a direct result of the illness. Together, make an effort to weather rough days positively, and have fun/laugh as much as possible on good days.”
Relationships can suffer when people don’t discuss problems that have no easy or obvious solution and that lack of discussion can lead to feelings of distance and a lack of intimacy. Finding ways to talk with one another about challenges in your lives is an important step towards effective problem solving and the feelings of closeness that come from good teamwork.
“Communication is key; we talk a lot about what is going on, how we’re feeling, and where to go with it. I think it helps that we are both determined to try and make the best of it, but at the same time we don’t try to hide the worst of it from each other.”
“My husband knew about my illness before we started dating. He was my friend before we became a couple so he knew what was wrong. We still had to have a conversation a few months in when he saw how badly lupus could affect me, but it wasn’t awkward at all; he was so understanding and has stood by me through everything.”
“I’ve had girls running away making excuses that they ‘need to go’. I don’t feel sad about it though. I’ve had SLE since I was 6 and I’m 28 this year, so it’s kind of my life; it’s an important part of me to understand. I’m happy my current partner has stuck around; we are on our third year and are as happy as day one.”
If you have lupus it is important to be clear and direct about what you want because your partner isn’t a mind reader. If you want to do things on your own when you are feeling good, but then get resentful for not receiving help when you are not feeling as well, it may make your partner feel as though you are giving them mixed messages.
“My husband asked to come to appointments with me but I was independent. I had forgotten that he and the children had a place in this. His mother had also had rheumatoid arthritis and died early of leukaemia, so he had been through this before. I had to change, to share; he needed to be included which stopped him worrying. Prior to this he had begun to distance himself, treating me as if I were ill.”
It is especially important to get your partner involved in what is going on with you. Perhaps you could invite your partner to join you at medical appointments. This can allow them to learn more about your condition and understand more about what you are going through medically. If your loved one works during the periods that you see your doctor, you can consider other activities such as attending a local lupus support group meeting or information event together, or at least provide them with educational material to read. If your relationship was already not on very good grounds, then inserting a chronic medical condition such as lupus can make things even more difficult for you. In that type of situation, professional help such as counselling may be needed to pick up new communication skills for reconnecting in a loving, giving two-way relationship. For more information about relationship counselling, you can visit the Relate website HERE.
A therapist should help couples understand each other and work as a team. There should be a discussion about what each person is losing because of the lupus and how they can comfort each other and rewrite their lives together.
“Talk, talk and more talk. Tell them your thoughts, hopes and fears and be sure to listen when they do the same.”
Looking after yourself
It is important to take time to look after yourself and not push yourself too hard to try and please your partner. It is important to listen to your body and pace yourself carefully. It is common for people with lupus to experience depression and/or anxiety. Lupus can also be very unpredictable, which only adds to the anxiety.
If you feel like you need additional support for your mental health, please discuss it with your doctor. For more information about depression in lupus and support services that are available, you can download our leaflet HERE. We also have a previous blog article about managing stress (HERE) which may be of interest.
Ensuring your partner looks after themselves
If you need additional care from your partner as a result of your lupus, it is important that they pay attention to their own physical and emotional health. If they don’t take care of themselves, it could cause them to feel resentful and/or burnout.
Look out for warning signs such as;
- Withdrawal from friends, family, and other loved ones
- Loss of interest in activities previously enjoyed
- Feeling blue, irritable, hopeless, and helpless
- Changes in appetite, weight, or both
- Changes in sleep patterns
- Getting sick more often
- Emotional and physical exhaustion
If your partner is having symptoms like these, it’s time for them to seek help both for their own well-being and to get support in caring for you. Advice for caring for somebody with lupus and information about available support can be found in our booklet, ‘Caring for someone with Lupus’ HERE.
“I may not understand everything about SLE but I am trying to. Now I understand it more. I’m not the person who runs away because someone has an illness, or disorder, or any diagnoses. I fell in love with him. I saw through his SLE and focused on how he is as a person. I fell in love and ever since I do my best to support him, be there for him and try to understand all the time. He is a wonderful person and I love him so much that there are no words for it.”
When you’re diagnosed with lupus, it’s natural to feel that your body has let you down. It’s not easy to think about being a sexual person when you’re dealing with pain, extreme fatigue, and side effects of medications.
You may experience a lack of desire. If you feel unable to satisfy your partner, you may also feel anxiety and guilt. At the same time, partners face the challenges of what to say, when to touch, and how to help—and they have desires and needs of their own. All of these factors can impact even the strongest couples.
Steroids can cause unwanted weight gain. Antidepressants can sometimes reduce your libido. Other medications may cause different problems, including vaginal dryness or a tendency toward yeast infections. Some blood pressure medications may have an effect on erections in male lupus patients. If troublesome side effects are affecting your ability to become intimate, discuss it with your doctor at your next appointment.
Here are some strategies for improving intimacy within your relationship;
Does it seem like your partner is reluctant to initiate sex out of fear of hurting you? Are you reluctant to have intercourse because it’s painful? If lupus has changed the way you interact in the bedroom, it’s important to talk to your partner as soon as possible. The best way to learn about each other is to talk openly. Try using the word, “I”;
- I like it when we…
- I feel some pain when…
- I would really like to try…
“Communicating where we are sexually is important; he and I had this discussion today in fact, checking in as I’ve been feeling very tired lately, and I wanted to be sure his needs were being met.”
If fatigue and pain are preventing you from feeling sexual, you can still enjoy intimacy with your partner. Explore non-sexual forms of intimacy like taking a walk and holding hands, cuddling or taking a bubble bath together.
“When you’re unwell, it’s the little things that you do for one another that count the most; love notes left hidden in the house, snuggling up and watching a movie together or looking at old photos/videos and reminiscing. Lots of kisses in the morning always help too.”
“It’s not been easy but we seem to have found a way. When we first get into bed we always cuddle and kiss, even if I can’t do anything else. We try to have lots of cuddles every day. This I think is keeping us closer. It would be so easy to drift apart.”
Pain during intercourse can be due to different emotional or physical reasons. The first step is to find out what the cause(s) may be. If your doctor or nurse is not bringing up the topic, consider raising it yourself.
Making specific plans for intimacy may not seem the most romantic idea at first, but the end result may change your mind!
- Pick a day and time when both of you will be able to relax and focus on intimacy.
- If you have children, arrange for them to be at a friend’s or family member’s house.
- Consider a change of scene: Get a hotel room, or get out of town for a long weekend.
- Make your time together a priority. It’s better to make a plan for intimacy and get some time together than to wait for things to arise spontaneously and end up not having any intimate time together.
“We’ve started doing once a month ‘date night’. We go on ‘adventures’; spur of the moment trips to the seaside, drives in the country, finding interesting landmarks and terrain in the immediate area we didn’t know existed.”
Make it easier
Pain, lack of flexibility, and dryness can put a damper on sex. There are a wide variety of tools and products that can help.
- Foreplay helps both mentally and physically. Try spending 30 minutes just exploring each other’s bodies.
- Kegel exercises, done by tightening and releasing the pelvic muscles, increase blood flow to the vaginal area, making it easier to get in the mood.
- If you have joint or muscle pain or stiffness, a warm shower or bath can help you relax before you join your partner. Better yet, have your partner join you.
- You may need to try different positions to put less strain on joints.
- It may be necessary to use a sexual lubricant before or during intercourse—especially if you have Sjögren’s syndrome or you are post-menopausal. There are several options—talk to the doctor or nurse you feel most comfortable with about your options.
“Adjustments have had to be made from the intimate point of view. Every ouch and crack now makes us laugh.”
Women with lupus are advised to avoid contraception containing oestrogen due to the increased risk of thrombosis (especially in those with antiphospholipid antibodies) and the possibility of flares.
Barrier methods or progesterone only contraception are recommended. These include the oral progesterone-only (mini-pill) pill, intra-muscular progesterone injections or implant. The Mirena coil is also suitable for people with lupus in a stable relationship.
If you are unhappy with your current method of birth control or are experiencing unwanted side effects, discuss possible alternatives with your doctor.
If you are planning a pregnancy, our booklet, ‘LUPUS: A Guide to Pregnancy’ contains lots of helpful information.
There are a great many resources out there which can help you optimise your love life. Enhance the UK have a section of their website called, ‘The Love Lounge’ which has lots of advice on anything to do with sex and disability, including relationship advice, dating and meeting people.
***Please note that this article is written for informational purposes only and should not be a substitute for professional medical advice or treatment. Do not delay seeking or disregard medical advice based on information here. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. It is also advisable to consult a medical professional before making any changes to diet or starting alternative remedies, which may interact with other medications.***
Thank you so much to everybody who submitted their tips and experiences for this month’s topic. We’re sorry if we weren’t able to use your comment in the article this time.