Living with lupus is extremely challenging for those with the disease. At the same time, It can also be a challenge, albeit a different challenge for their partner or spouse.  Statistically, within 5 years of a lupus diagnosis, nearly half of married women are divorced. Fortunately, understanding the challenges and knowing where to get help, can go a long way in allowing each person to move forward in the healthiest way possible.

• • Introduction
  • Lupus and Personal Relationships – What are the challenges?
  • What can couple do to address these challenges?
  • If divorce is the choice, what should you do? 
  • Final Thoughts

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Introduction

First things first … it is not all bad news!  Living with lupus and other autoimmune or chronic conditions can be a challenge, yet many have successful marriages and healthy, personally intimate relationships with their partners.  Additionally, lupus does not have to be a barrier to getting into relationships.  As a matter of fact, one study found that 40% of those with lupus married after the onset of their SLE.

Still, the stress of living with lupus or other chronic diseases can have a profound affect on all personal relationships, including marriage. It is not uncommon for couples to feel that their relationship can “get a bit crowded” – they, their partner and their partner’s chronic disease.

This article will cover some of the main issues that couples living with lupus can face, what can be done to maintain a healthy relationship, and if separation or divorce is necessary – what are the most important things to consider?

Lupus and Personal Relationships – what are the challenges?

Some quick facts/points about how lupus can affect intimate relationships:

• • On average, within 5 years of a lupus diagnosis, nearly half of married women are divorced.  
  • Studies show that women diagnosed with lupus before age 30 are less likely to be married or living with a partner compared to the general population.  This does not seem to be statistically true for women who are diagnosed later in life.
  • Men with lupus do not seem to follow this pattern either.  There is certainly plenty to explore concerning this disparity!
  • Difficulties with sexual intimacy only account for about 4% of those couples who separate.
  • Women more often have rheumatic conditions, but men are more likely to become chronically ill.
  • Overall, couples where one partner has a serious chronic disease can have a divorce rate of up to 75%.

Many aspects of lupus can take an incredible emotional toll on a marriage or other relationships:  Its unpredictability,  physical and psychological symptoms, sometimes ambiguous diagnoses, difficult treatment plans, financial stresses, and a lifetime of uncertainty can all lead to marital strain or exacerbate tensions that already exist in a relationship.  

However, understanding these issues and learning how to deal with them honestly and with self-awareness can make all the difference.

What are some of the challenges faced by couples when one partner is living with lupus?

The Physical and Emotional Toll

Physical symptoms, such as chronic pain, fatigue, and cognitive difficulties (like “brain fog”), can significantly affect a person’s ability to participate in normal activities in life – and of course significantly affect the expectations of a partner or spouse.  The emotional burden of dealing with a chronic illness can lead to depression and anxiety for both people “living with lupus,” further straining the relationship.

Changes in Roles and Dependency

Chronic illness often leads to an imbalance in the relationship – a shift in household roles and dynamics – where the healthy partner takes on more responsibilities, and overwhelm their role as a partner. This commonly leads to frustration, resentment and even loss of identity.  It is difficult to be both a “soul mate” and caregiver.  The term “care partner” is now used more commonly to better describe this relationship.

This shift in roles can also affect the partner with lupus, of course, leading to feelings of dependency, guilt, reduced autonomy and their own sense of identity,

Social Isolation

It is important to remember that chronic disease not only can affect the partners, but also their social circles and the expectations of their families and friends. Couples dealing with lupus may end up self-limiting their social lives as a couple – staying home, avoiding larger groups, social occasions and their larger communities. This isolation can result in feelings of loneliness and a lack of external support, which are crucial in maintaining healthy relationships for anyone.

Unpredictability 

Few things are as difficult for a long-term relationship as the inability to be able to plan ahead.  With lupus and similar autoimmune conditions, it is hard enough to plan activities a week in advance, much less years ahead.  Planning for careers, children, retirement amid so much uncertainty can be overwhelming.

Communication Breakdown

Good communication is important in any relationship, however it becomes even more critical when managing a chronic illness. It is also one of the first things lost when experiencing a health crisis like lupus.  Couples may struggle to communicate their needs and feelings, leading to misunderstandings and unnecessary conflicts. Both partners might feel shame or resentment and chose to limit communication rather than risk arguments.  The lack of communication further erodes intimacy and understanding and can lead to estrangement.

Financial Stress

The financial implications of lupus can be significant. Medical treatments, hospital visits, and the potential inability to work can lead to substantial economic strain.  

• • In 2023, it was estimated that for those with a chronic condition in the US, the average cost of health care coverage was 5x higher than for those without a chronic condition.  
  • One of the most common reasons for divorce occurs when one spouse loses a job or career and cannot provide as much financial support for the couple or family.  
  • The stress of managing these financial pressures can exacerbate existing marital tensions and contribute to the breakdown of the relationship.

Sexuality and Intimacy

Lupus can significantly impact physical and emotional intimacy. Though studies have shown that this is rarely the most important factor, chronic pain and fatigue can reduce the partner’s ability to engage in physical affection, and emotional stress can diminish sexual desire. This can lead to a decrease in intimate interactions, which are vital for maintaining a close marital bond.

What can couples do to address these challenges?

Be present, open and honest!  The first thing is to be observant and and honest with each other.  Be present with your partner and do not avoid problems.  That way possible issues can be identified long before they become a real problems!

Communication, communicate, communicate!  Open communication about the disease and its impact, coupled with mutual understanding and patience, is essential.  Good communication may take practice and it may take help form others.

Therapy can help!  Working with a neutral party – a  therapist – can help you and your partner learn how to work together, recognize issues and to communicate them effectively. You would be surprised how many techniques (and tricks!) therapists can help with.  Of course, this therapy can be done together – couple’s therapy – or individually, with each person seeing a therapist separately.

Expand Your “Care Team.”   It can be embarrassing to ask for help, but neither you nor your partner need to do everything alone.  Though everyone’s family or friends group is different, and you would not want to over-share you may find others willing to help.  

Also, if possible, have someone, other than a spouse, take on more of the caregiving role.  If it costs money, it might be money well spent!

Cherish and plan for intimacy.   This can include sex, but it can also include simply being present together or consciously experiencing comforting, pleasant or exciting experiences together – walking together, binging a show or sharing a bubble bath.  

Be Financially Smart.  Financial planning can also alleviate some of the pressures associated with managing lupus in a marriage.  Learn as much as you can about: 

• • Social security and disability;
  • Life insurance (not just health insurance);
  • Keep track of claims and coverages, and 
  • Share your illness with a financial professional.

Join a support group that welcomes spouses, partners or caregivers!  Many support groups, like Kaleidoscope, welcome caregivers to meetings, events and other activities that can make it so much easier to realize that no one – not the person with lupus and not their partners – need to feel they are doing this alone!

If divorce is the choice, what should you do?

It may happen that some problems cannot be solved and one or both partners feel that a separation is necessary.This can be devastating for anyone much less someone living with lupus or other chronic disease.  What can you do?

Take care of yourself.  

Make sure you stick with your medications; maintain a healthy diet, and try to exercise appropriately … no matter your marital status.  A divorce can be incredibly stressful.  It may even trigger flares or worsen symptoms, so do not make things even worse by “giving up” on your health.

Ask for help.  

Set up a support system of family and/or friends that can help you through the difficult times – especially if children are involved. Your healthcare provider may also have additional assistance or resources that you could use.

Here is also where your religious and faith community may also be a source of strength and support.  You are probably not the first person in your church, synagogue, temple, mosque or other community of worship who has gone through something like this!

Tell your lawyer and financial planner.  

Anyone who is helping you with legal or financial issues, should also have an appropriate understanding your medical condition.  Your symptoms and treatment plan could have a significant impact on how your attorney approaches possible legal proceedings such as alimony or child support, if necessary.

Tell your healthcare provider.

Losing a spouse will have a dramatic affect on your overall healthcare team and your PCP and/or rheumatologist may need to take this into account when monitoring your overall health.  This may affect your ability to make appointments or maintain your treatment plans.

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Final Thoughts

Lupus presents numerous challenges that can strain a marriage, potentially leading to divorce. The physical, emotional, financial, and social impacts of the disease require couples to navigate complexities as individuals and as partners.  Each person will be challenged to adapt to new roles and expectations that other couples may never experience nor understand. 

While this journey is difficult, taking proactive steps towards better communication, support, and understanding can help preserve and strengthen your marriage or partnership … or at least approaching separation from a place of respect and compassion.

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References

Brailovski E, Vinet E, Pineau C.A., Lee, J., Lukusa, L., Kalache, F., Grenier, L-P, DaCosta, D., & Bernatsky, S. (2019). Marital status and age of systemic lupus erythematous diagnosis: The potential for differences related to sex and gender. Lupus Science & Medicine, 6(1). https://doi.org/10.1136/lupus-2019-000325

Burnham, P.S. (2020, October 29). Can a chronic illness affect my divorce? Linkedin. https://www.linkedin.com/pulse/can-chronic-illness-affect-my-divorce-philip-s-burnham-ii-esquire

Huangfu, Z. (2020). Life course changes provoked by chronic disease: A study on everyday life for patients with systemic lupus erythematosus. International Journal of Nursing Sciences,7(1), S31-S37. https://doi.org/10.1016/j.ijnss.2020.05.006.

Lupus UK. (2017, March 1). Lupus & Relationships. https://lupusuk.org.uk/lupus-and-relationships/

Stein, H., Walters, K., Dillon, A., & Schulzer, M. (1986). Systemic lupus erythematosus–a medical and social profile. The Journal of Rheumatology, 13(3), 570–576. https://pubmed.ncbi.nlm.nih.gov/3735279/

Zeppeiri, M., (2018, September 4). In sickness and in health: Marriage and chronic illness. Lupus New Today. https://lupusnewstoday.com/columns/lupus-sickness-health-marriage-chronic-illness-tips/

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Author: Greg Dardis, MS      

Professor Dardis was formerly the Chair of the Science Department at Marylhurst University, Assistant Professor at the American College of Healthcare Sciences and currently an Assistant Professor at Portland State University.  His focus has been human biology and physiology with an interest in autoimmunity.  Professor Dardis is also a former President of the Board of Directors of Kaleidoscope Fighting Lupus.

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All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.