**I got my husband’s permission to share about his particular illness.
There are many ways illness can affect a marriage. Some couples deal with lifelong conditions such as diabetes. Some are faced with a reality of chronic and often degenerative disease. Many are surprised with acute catastrophic illness. In just about every case, both partners are impacted by the illness, and together the couple must find a way to restore some kind of relational homeostasis.
A strong marital relationship can be a huge benefit in dealing with these types of stressors, even though it’s normal for couples to feel overwhelmed by medical challenges, and adjusting can be difficult. A while ago, I was involved in a research project coding data for a study about how diabetes impacts marriage. I read participants’ responses firsthand, and it was touching to see how many people saw themselves as being “in it together,” which seemed to enhance their coping abilities.
About two years ago, I was in the laundry room and heard my husband calling my name from our bedroom at the other end of the house. I walked in and found him fighting tears as he explained, “The pain is so bad I can’t stand up out of bed. Can you help me?” He had discovered the day before that the pain that had recently flared up in various places in his body was a condition he inherited from his father called ankylosing spondylitis, which is an inflammatory disease affecting the spine and many joints. He had always known he was a carrier, but he had managed to reach the age of 48 without a previous severe flare-up.
I had literally never seen my husband in so much pain. I can probably count the number of days my husband has missed work for illness over the last three decades on two hands. He has also been very active and involved with exercise and sports. I knew this was serious, because it was so atypical of him. It was hard to watch him in so much pain and not be able to help him. I had no idea how long he would be suffering, or how well he would recover. This particular illness can be very unpredictable. I had to assist him in and out of bed until the medication he took calmed down the inflammation so he could return to normal activity.
After the inflammation dimished, the doctor prescribed a medication to suppress his immune system. He hated it. It made him tired, nauseous and grouchy (I know, ladies…sounds like pregnancy). He was definitely not himself. After a few months, he refused to take it anymore and decided to target his symptoms with a more careful diet and exercise.
While all of this was happening, I recall feeling helpless and afraid. These were two feelings many of my couples explained they felt when dealing with a spouse’s illness. The feelings only intensify the more serious the illness.
While I in no way wish to minimize the pain and stress many conditions cause, I am offering a few reminders for how couples can facilitate coping with these situations. It’s common for the feelings of helplessness to become so pervasive that couples become paralyzed from taking any proactive measures, which only exacerbates the feelings of helplessness. There are small things couples can do to cope, even if the condition never goes away.
- Talk about the illness. What losses have you experienced since the illness appeared? What is the hardest part for each of you? What do you still appreciate about each other?
- Focus on what you can do. It’s so easy for partners to notice what they can’t do that they used to be able to do before illness struck, and with that realization, grief often clouds their views. While my husband was down with AS, our lives slowed down for a while, and it was actually nice to be able to sit and talk about things we usually didn’t make time for, or to lie in bed and watch a movie together, which is something we rarely do.
- Create boundaries around the illness. Part of the problem with many illnesses is that they are so pervasive and take up so much space in the relationship, because they literally never go away. They are like unwanted houseguests that have taken up permanent residence. Have regular periods of time in which you don’t talk about the illness, but instead have a different topic of conversation. If the illness is unpredictable enough that you can’t find an hour of time, take five minutes. The importance here lies in the proactive component, to exercise what power you do have over the illness.
- Appreciate and celebrate what you do have together. Share positive memories. Share feelings of appreciation. Be proactively positive.
- Share specific needs. This goes for BOTH partners. Since the sick partner often has obvious needs, the other partner doesn’t feel like they can ask for anything from the sick partner, but there are always ways to get needs addressed, even if in small ways. Partners can ask for verbal reassurances, written expressions, or even a hug.
- Seek outside support. This is perhaps the hardest for couples who don’t want to burden other people. However, illness is a HUGE stressor in marriage. It is so helpful to have outside social support to help in small ways. When my husband was down, I remember asking my friend to pick up items for me from the grocery store while she was there, which alleviated part of the burden. If you feel housebound, find an online support group. Talk to people.
There is research supporting the notion that couples who are “relationship-focused,” adjust to illnesses with less distress than other couples. These are couples who see the regular care and maintenance of the relationship as essential as the care of the individual. They constantly seek information and put forth effort to repair and improve the relationship. It’s a way of sealing a boundary around the marriage despite tragedy. It’s one of those “us against the dragon,” scenarios.
About 12 years ago, my father-in-law, in his early 60’s (which looks very young to me as I stare 50 right in the face), fell on his bike without a helmet and suffered a traumatic brain injury that resulted in a severe stroke and required the removal of damaged brain tissue. It was a miracle that he ever recovered enough to speak and have a conversation. He is very functional and capable and works in his yard a lot, but he was permanently altered. His personality is quite different than it was before the accident. Over the last 12 years, I have watched my mother-in-law, who is a very patient person, exercise extreme patience and kindness with him. Even though I know this must have been tremendously hard for her, she doesn’t complain about her losses, possibly in part because she was so glad she didn’t lose him entirely. They can’t travel like they had planned, and can’t do some of the things they had wanted to do because of his cognitive limitations, but they visit their grandchildren and find joy in other activities. She has been an excellent of example of supporting a partner in illness.
Illness can strike at any time, but it doesn’t necessarily have to destroy the relationship. Exercise your power…in health AND in sickness.