Couples and Special Healthcare Needs: What You Need To Know
By Laura E. Marshak, PhD
Author’s Note: The word “marriage” can be used interchangeably with couples relationships of all kinds. The relationship challenges are similar whether couples are legally married or not.
There is a general belief that having a child with special healthcare needs puts such a strain on marriages and relationships that it places them at great risk. Definitive statistics on the divorce rate of couples with children with special healthcare needs are not available but there is general consensus that it is somewhat higher than in families without a child (or children) with special healthcare needs. The impact of a child’s special healthcare needs on marriage cannot be described by a simple formula but some points are clear:
• A child’s special healthcare needs does have a large impact, but it is not known in advance whether it will have a positive, negative, or mixed effect.
• Overall, you can think of it as magnifying what occurs in a family and marriage without special healthcare needs. Closeness may be stronger, divisions greater, anger increased, sadness deeper, parenting decisions weightier, and happy times may be more thrilling.
• There is no doubt that marriage and relationships are more complicated.
• Just as we learn to adapt our child-rearing skills to meet the unique needs of our children, we generally need to do the same with our marriages. Both in child-rearing and marriage, having children with special healthcare needs requires that we develop even better skills than others may need to have.
Individual Challenges and Couples’ Challenges
The impact on a marriage of having a child with special healthcare needs is affected by each parent’s own adjustment, the flexibility of their marriage, and their access to outside support. Often a marriage can improve a great deal through successfully handling individual and couples' tasks along with gaining additional resources.
Individual tasks are emotional challenges that need to be managed on a personal basis. While your partner may help you with these tasks, he or she cannot do them for you. Common individual tasks include:
• Managing grief
• Maintaining perspective
• Protecting a corner of life for yourself
• Finding sources of strength
• Coping with uncertainty and fears of future
• Managing guilt, fear and shame
• Finding healthy support outside of the marriage
• Finding meaning in the special healthcare needs experience
Common couples' tasks include:
• Build or rebuild a bond despite the tendency of a child’s special healthcare needs to be “all encompassing”
• Accepting differences in emotional reactions to special healthcare needs
• Adjusting to roles that meet family needs in a manner that feels necessary, fair and does not breed hard feelings
• Maintaining a romantic connection and the ability to see each other as more than “parenting partners”
• Developing a creative vision for the future
• Being a team
In addition, some of the building blocks of a strong marriage can be put in place by dealing with problems and finding external supports and resources. The most determined, best-adjusted individuals cannot make a marriage work with a child (or children) with special healthcare needs if there is not a foundation of external support. It is only for a limited time that a couple can function on little sleep, have no time whatsoever without their children, and actively battle to obtain proper medical care and other needed services.
External supports include:
• Allowing others to help to give you time away from parenting
• Good medical, educational, and rehabilitative services
• Forming relationships with others for support, enjoyment, and emotional
closeness
Improvements to your marriage may be made by using just a few of these building blocks of change. For example, positive changes can be seen when one partner learns to better handle his or her grief, reestablishing marital roles together, and finding new or additional sources of support from outside the marriage.
Taking Care of Your Marriage and Your Busy Life
The idea of taking care of your marriage while you're incredibly busy with children may initially feel like a big task. You may be used to putting your needs, as well as those of your marriage, on hold. This works for a short time. Over time, this becomes a problem. All people and all marriages need some care and it's not easy. Here are some of the common challenges couples face along with ideas for solutions.
Time
When a couple has a child or children with special healthcare needs, it is not realistic to expect that there will be as much time and attention to give to each other as there may be in other homes. This does not mean that the quality of a marriage has to suffer. Within this framework I think about the old motto, “Work smarter, not harder.” Being mindful can help us work smarter without having to spend great amounts of energy. Being mindful is different than worrying. It means not letting the rest of life keep you from taking care of your marriage. Being mindful involves making small, consistent, deliberate changes in our attitudes and behavior within the marriage.
If you spent a focused twenty minutes a day on your marriage, the impact would be large and this would still be less than 2 percent of your day.
Are you already thinking, “I really don’t even have this much time for my marriage?” Simply put: Marriages need some attention and the time may need to come from other activities. This brings us to the art of prioritizing, an important part of adjustment to living with special healthcare needs. People can’t “do it all" and when special healthcare needs enters the picture, there is a greater need to carefully pick and choose (as much as possible) where you put your time and energy.
Stress and Child-rearing Demands
Having children with special healthcare needs puts a marriage at risk of having more stress. It is easy to use stress as a reason not to pay attention to one’s marriage because it feels as if there is no energy left. People sometimes say they will deal with their marriage when things get easier. The problem is that stress generally does not end. Even more importantly, it is in stressful times that a marriage can be particularly important. It is easier to handle things in general if one’s marriage is strong.
Making small marital changes takes less energy than imagined and decreases daily stress.
Many parents find it hard to identify the times when it is all right to set aside a child’s needs to tend to their personal and married life. This is difficult in many marriages but even more so when a child has a disability or illness.
On a daily basis, children’s needs often do need to be taken care of first, yet a steady practice of putting a child over a spouse causes problems. It is also not best for a child.
Adaptability
We all know of people who are able to show strength in handling serious problems. Many of these people display a natural flexibility that helps them deal with parenting and marriage.
The "Serenity Prayer" provides a wise and powerful framework for coping: “God, grant me the serenity to accept the things I cannot change, Courage to change the things I can and the Wisdom to know the difference.”
Setting religious beliefs aside, this two-pronged approach is still a beautiful fit for the problems people face in marriage and in parenting children with special healthcare needs. It helps us to be brave in seeking solutions to difficult, frightening problems while also being able to find ways to accept and function in realties that can’t be changed. It demands two kinds of strength: moving forward even while facing obstacles and living well with circumstances that are truly beyond our control.
Managing Perspective
Living well with circumstances beyond our control often requires us not to get stuck in self-pity.
Mourning versus Self-Pity
It is important not to confuse mourning with self-pity. Mourning is the natural grieving process, which includes feelings of deep sadness. Self-pity is feeling sorry for oneself. It is not unusual for a parent to be wrapped up in mourning, or grief, when learning of a child’s special healthcare needs. This period of grieving helps some cope and move forward and can last as much as a year or two.
There is a time for self-pity and a time to contain it.
Self-pity is natural, but there is a time to control feeling sorry for oneself. The following is an example of one woman who understood the need to draw the line on self-pity in order to start coping.
“In the beginning, when I just found out about my son, there was a period of self-pity. Why us? Why me? How can this be? And I would go out and run and bawl my eyes out and cry in self-pity. I knew there had to be a turning point. I said to myself, ‘I have to do something to get out of this. I can’t get stuck here because these problems are not going away. If I get stuck here feeling sorry for us, we’re not going to grow.' We have to accept it and say, ‘What do we need to do to make it better?’"
The issue regarding self-pity is the amount of time spent with these feelings. I agree with the advice provided by one parent: “Pity parties are fine now and then but keep them brief.”
This is important because self-pity weakens you over time; compassion for yourself doesn’t. Other parents caution that it leads to acting out on others: “People could take a look at any of us having the children we have and feel like we’ve really been violated. Why us?! If you get stuck there, it affects your reaction to everything and everyone.”
Feelings of self-pity need to serve as cues to do something better for yourself, not dwell in those feelings.
Practice self-compassion, not self-pity
Self-compassion is a great substitute to self-pity. It is harder to parent children with special healthcare needs, and self-compassion can make it easier. Rather than feel entitled to feeling bad, feel entitled to treat yourself with compassion. Ways to practice self-compassion include:
• Giving yourself a break by accepting your limits, practicing self-forgiveness, and treating yourself kindly.
• Releasing yourself without guilt from activities you would have undertaken under easier circumstances and which often involve doing for others. This might include volunteering at school and being the host for holiday meals.
• Not feeling guilty if you just can’t stretch yourself enough to meet everyone else’s needs.
• Being less harsh with yourself when stress causes you to act in a manner that is personally disappointing.
Change your frame
How do people find their way out of self-pity? You must find a way to step back and view a larger picture of your own making. When we are in a state of self-pity, we focus on the part of our life that is upsetting—this is the picture we see. It is as if it has a frame around it. One important way to genuinely feel better about your life is to change your frame of reference. Using a photography example, it is like switching from a zoom lens to a wide angle lens.
This new view can be accomplished in a few ways. One way to switch your focus is to use a structured way to make yourself look at what is good in your life.
In general, it is better not to compare.
Adjustment to special healthcare needs involves learning not to compare your child or situation to others’. You must find value and enjoyment in what you have, even if it differs greatly from the norm. This is also an important piece of learning to avoid self-pity. Many parents we interviewed spontaneously offered their thoughts on the importance of not comparing.
• “There is no normal. There is no such thing. Don’t watch too much TV or look at the soccer moms and feel that you have to live up to what they are. Don‘t worry if you are different from those other women.”
• “Don’t compare your child’s achievements with others. It will drive you crazy!”
Part of not comparing requires not comparing to how you “assumed” your family would be. It can also be painful to compare your child to others who have the same diagnosis.
If you must compare, be thoughtful about how you compare.
Parents find some careful comparisons to be helpful. Examples follow.
- “There is always a silver lining: My daughter has all her problems, but she is not out getting pregnant and she’s not out smoking dope. My son’s not out wrecking my car. The problems are different, not the popular problems."
- “This may sound odd but it works for me. Sometimes I think about all the children in the world together, not just those in my small part of the world. I think about what I have read in the newspapers. This includes the parents and children who died a few years ago (in the Philippines, I think) in an avalanche of garbage where they lived picking through the trash to get a means of subsistence. Believe me, this cures self-pity and pity for my child fast!”
A common strategy is to compare your situation to someone who has it worse. It works, at least for a little while. Sometimes a little while is all we need to regain a bit of strength to keep coping.
Concluding Thought
I wish to remind you of something that should be obvious but isn’t always: Being a good parent does not always equate to being a good husband or wife. One father commented:
“The roles and responsibilities of being a father and a husband often get intertwined, mostly for the bad. Overcompensating in one role usually means you’re neglecting the other role. For a long time I didn’t get it when my wife criticized me as a spouse. After all, I was doing more for our son than almost any father I knew. Eventually, I understood that I was doing a great job meeting my son’s needs but not hers. One does not make up for the other.”
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This excerpt is from the book "Married with Special-Needs Children: A Couples' Guide to Keeping Connected" by Laura E. Marshak, PhD and Fran P. Prezant, M.Ed., CCC-SLP. Visit www.DisabilityAndFamilyBalance.com
Thank you, Laura and Fran, for giving us permission to edit and reprint.
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