It seems like with chronic illness in marriage you either hear the extremes of horror stories or, on the other end of the spectrum, some very beautiful stories. I’ve heard of a wife getting a bad form of cancer, the husband deciding he just didn’t want to deal with that and bailing out on her. And then there’s a much-loved couple in our own church and she developed Alzheimer’s fairly young and his response has been to double down on his faithfulness and care for her, saying, “I guess it’s my turn to pull the wagon now”.

Any kind of long-term illness can be extremely tough for married couples as one spouse struggles to cope with the symptoms and effects of illness and the other takes on a carer role, trying their best to look after their ailing spouse. It looks very different for each spouse, but for both it can be hard to know how to cope.

Instead of focusing on individual things each spouse can do, it is helpful to think in terms of joint coping: both spouses taking responsibility for coping with the illness and sharing stressors and resources[i].

Joint Coping with Health Problems

What you need to know is the way you interact and respond to each other’s coping strategies is just as important as the strategies themselves. For example, the non-ill spouse needs to be able to see what kind of support the ill spouse (called the “patient spouse” in the research) is in need of at any given time: do they need practical support, problem-solving, or emotional reassurance?

Coping as a couple is affected by two main factors: the patient and spouse’s “appraisal” or understanding of the illness, and the coping strategies they use to deal with it.

Appraisal of Illness

How the patient and their spouse each view the illness will affect how well they support each other through it. There are three specific issues that we want to draw your attention to[ii]:

Understanding of the Illness

Do both spouses fully understand the nature, possible duration, and consequences of the illness? If an understanding of the illness differs between spouses this will naturally lead to different expectations of how much support is needed (e.g., if the spouse thinks the illness is not a very big deal then they will naturally put less effort into helping the patient spouse cope). So we want to be sure that both parties understand the scope and prognosis of the illness.

Ownership of Illness

Is the illness viewed as a joint problem, or as the patent spouse’s problem which the other spouse may or may not be required to help with? Mismatches on this will again naturally lead to ineffective coping. This also raises the issue of togetherness: is the illness your problem or is it our problem?

Broader Context

How much support do you expect from your spouse, based on culture, family of origin etc? Were you raised to share all burdens between you, or to respect their independence and dignity by being more hands off? Again, different expectations here could lead to poor coping.

Different appraisals or expectations in these areas can lead to poor coping with the illness, so couples should try to make sure they are on the same page regarding the nature of the illness and how much support is required/desired.

Coping with Chronic Health Problems

When you look at all the ways a spouse can support their patient spouse, they fall into two main categories[iii]:

    1. Problem-focused: providing practical support such as helping provide or facilitate treatment, assisting with practical needs or taking care of needs and responsibilities while the patient spouse is unable to
    2. Emotion-focused: providing emotional support to help the patient cope with the stress of the illness

Problem Focused

Each of these styles of coping can be either helpful or unhelpful, depending on what you do.

Helpful problem-focused coping is often referred to as “active engagement”: both spouses taking an active role in discussions with doctors, researching treatment options, brainstorming ideas and solving all the little daily problems that the illness can throw up. This style of active engagement leads to improved mood, sense of self-efficacy and marital satisfaction for both spouses and reduced symptoms an anxiety and depression for the patient, but only when both spouses were equally engaged[iv].

Unhelpful problem solving could include taking too much control, forcing the patient spouse to try a certain form of treatment when they don’t want to, underestimating the patient spouse’s own ability to look after themselves, etc. Many ill spouses find that there’s a fine line between their spouse wanting to help, and wanting to take control. These domineering strategies often lead to lower marital satisfaction and higher rates of distress for both spouses, and can even increase the patient spouse’s symptoms and pain levels.

Emotion-Focused

Good emotion-focused coping includes normal marital communication things like listening, showing affection, self-disclosure, emotional responsiveness etc. Unhelpful emotion coping could include encouraging the patient spouse to avoid facing the reality of the illness or minimizing the seriousness of the illness. “Buffering”- where the one spouse hides their true worries and emotions due to fear of causing their spouse further distress- is also considered an unhelpful strategy. All of these can reduce marital satisfaction and increase distress.

 

Looking After Your Chronically Ill Spouse.. And Yourself

Once again we’ve created a bonus guide for our much-appreciated supporters entitled “Looking After Your Chronically Ill Spouse…And Yourself”. This three-page guide has some links to very useful resources for spouses supporting someone and also will help you just take a step back and consider the bigger picture of your marriage so that you can keep things in perspective during this challenging time. You can get this by becoming a patron of The Marriage Podcast for Smart People.

 

Levels of Spouse Involvement

You’ve probably witnessed other friends/couples going through a health crisis. And like I mentioned at the start, there’s often some extremes we go to in times of crisis. Well, a research paper written in 2007[v] describes four levels of support the patient perceives that they receive from their spouse. Note these are about the patient spouse’s perceptions, not necessarily actual levels of support

    1. Uninvolvement: patient believes they are coping with the illness alone
    2. Support: spouse offers some emotional/practical support but it is still mainly the patient spouse’s problem to deal with
    3. Collaboration: taking joint responsibility, joint problem solving
    4. Over-involvement: patient spouse feels their spouse is too involved, taking control or being over-protective.

Generally, collaboration is seen as the best way to cope, although some spouses may be happy just receiving support and not needing joint responsibility for the illness. But I think this is a good checkpoint to stop and have that conversation with your spouse to see if you are providing an appropriate level of support.

You see, it’s quite easy for this to go a little haywire. If the patient spouse perceives that they are receiving no support from their spouse, and the spouse thinks they are providing lots of help, this becomes a case of “invisible support”, where the patient spouse feels ignored or abandoned, and the other spouse feels unappreciated, leading to low levels of coping and marital satisfaction for both[vi]. Spouses, therefore, cope most effectively when they agree on how and what support is to be provided.

Caregiver Self-Care

Using helpful coping strategies, having the same understanding/appraisals, and finding the right balance of problem and emotion-focused support can reduce distress, pain, depression and even mortality rates for the patient spouse[vii]. These strategies also increase marital satisfaction and reduce distress for both the patient and their spouse.

However, some research (not all) suggests that increasing the amount of care you provide for your spouse can increase the distress, depression, and anxiety you experience as a caregiver, so the non-patient spouse needs to find ways to cope with the situation too. This is something that can be pretty easy to overlook.

So how are you coping? Here are some suggestions:

    1. Keep relying on your spouse emotionally: don’t let the illness be a barrier to still confiding in and relying on your spouse. Remember that emotional support from the patient spouse is a strong protective factor for the other spouse[viii].
    2. Also, feeling like they can no longer support you and meet your expectations is a major source of distress for the patient spouse[ix]. So it is good to give your patient spouse the opportunity to return some care to you as well.
    3. Outside social support: support from friends acts as a stress-reducing buffer during especially difficult times. Individuals with stronger support networks are much more able to cope with the demands of a chronically ill spouse[x].

Overall we hope this has been an encouraging episode for you. A chronic illness can be a major factor in your lives but it doesn’t necessarily have to lead to an unhappy marriage!

References

[i] Cynthia A. Berg and Renn Upchurch, “A Developmental-Contextual Model of Couples Coping with Chronic Illness across the Adult Life Span,” Psychological Bulletin 133, no. 6 (November 2007): 920–54, https://doi.org/10.1037/0033-2909.133.6.920.

[ii] Berg and Upchurch.

[iii] Berg and Upchurch.

[iv] Berg and Upchurch.

[v] Berg and Upchurch.

[vi] Berg and Upchurch.

[vii] Lynn M. Martire et al., “Is It Beneficial to Involve a Family Member? A Meta-Analysis of Psychosocial Interventions for Chronic Illness,” Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association 23, no. 6 (November 2004): 599–611, https://doi.org/10.1037/0278-6133.23.6.599.

[viii] T. A. Revenson and S. D. Majerovitz, “The Effects of Chronic Illness on the Spouse. Social Resources as Stress Buffers,” Arthritis Care and Research: The Official Journal of the Arthritis Health Professions Association 4, no. 2 (June 1991): 63–72.

[ix] Berg and Upchurch, “A Developmental-Contextual Model of Couples Coping with Chronic Illness across the Adult Life Span.”

[x] Revenson and Majerovitz, “The Effects of Chronic Illness on the Spouse. Social Resources as Stress Buffers.”