​When you are the parent of a child with a rare disease, there are many emotional costs to wrestle with. After a while, even the most resilient parents may find that the burdens of caregiving have transformed their closest relationships in ways that leave them feeling frustrated and unhappy. Sometimes, the all-encompassing care required by your child can deprive you of the desire for intimacy that you and your spouse once enjoyed.

 

Experts agree this loss of intimacy is one of the most difficult aspects of caregiving. No wonder that in trying to adjust to a whole new life, intimacy can be lost. But caregiving parents need the emotional support that comes from hugging, touching, holding, and kissing. Here are a few ways to keep intimacy alive in the face of caregiving challenges:

 

Communicate

Communication is the essential element of any relationship. Talking about loss of intimacy is hard enough in the best of times; when your child’s illness is added to the equation it can seem impossible. But talking about your feelings will not only help you remain positive, it will reduce misunderstandings and frustration. Don't assume what your partner needs or wants. Ask. And say what you need and want.

 

Make Time to be Together

While this may seem absolutely impossible, there are some parents who have found creative ways to grab even 10 minutes together. Sharing responsibilities and activities is an essential aspect of intimacy. Find some elements of your caregiving that the two of you can do together.

 

Try having a “date” at home. Getting dressed specially and using real dishes for dinner can evoke a time when you had time for intimacy. Set aside 10 minutes a day when the two of you have a conversation about anything but rare disease caregiving or its many challenges.

 

Be Patient

You are both under great pressure. Let intimacy emerge in small ways. A quick hug, a squeeze on the arm or a reassuring soft kiss may be what is needed to establish a connection.

 

Strive for Balance

As tough as its sounds, you can't let caregiving become all-consuming. Don't let the disease dominate the entire family system. Remember to take breaks and maintain portions of your life outside the home no matter how hard it might be to do so. The only way you can continue to be an effective caregiver is by nurturing yourself. You need to stay healthy yourself to be strong enough to provide care for your loved one.

 

Intimacy requires trust and hard work. It is not automatic and it ebbs and flows over time and with changing circumstances. Caregiving certainly can cause changes in intimacy – and the effort to maintain intimacy can be more strenuous than ever before – but don’t let intimacy be a casualty of caregiving.