Having a loving and committed romantic relationship is one of the joys of life. A long-term partner fills many roles through the years or even decades. Your shared history together can be a source of fun and connection, and it can also steady you with strength and support in difficult times.
Breakups are common and half of all marriages end in divorce, so it’s no surprise that sustaining relationships takes work. Many of us want to take steps to maintain our relationships, but we just don’t know how. Add a rare or serious disease to the mix and the complications multiply. Facing a health struggle together can deepen your bond with a partner, but it also can overwhelm someone who was not expecting to serve a caregiving role.
Did your diagnosis come before you formed the relationship or was it thrust upon you both at the same time? A surprise diagnosis can be shocking to both parties and leave the healthier person wondering what the future holds and whether they can accept the knowns and unknowns that lay ahead.
But despite it all, many chronically ill people have strong and sustaining relationships. How do they do it? Know that there is a way to build a loving partnership that lasts. Here are five areas to work on together:
1. Take steps to prevent caregiver burnout: Your partner may at times become your caregiver. (I prefer “care partner.”) Assess what kind of care or assistance you need and how much your partner is willing and able to provide. What are your partner’s strengths? No one can be everything and do everything.
Reach out to friends and family members, too, and ask for their support. Having several care partners can reduce the strain on your relationship. It decreases isolation and keeps you connected to a wider community of people who care about you.
2. Maintain a partnership that’s about more than caregiving. Prioritize your partnership – and your partner – even though managing chronic illness can sometimes be a full-time job. Schedule date nights and look for ways to connect. Your partner will have their own stressors in life. Ask what kind of support they would like to receive from you.
Show interest in their lives. Find ways to spend leisure time together. Keep an open dialogue about how maintain your sexual connection. If your physical condition is limiting, find new ways to connect. Remember that able-bodied partners have to do regular relationship maintenance, too.
3. Acknowledge your partner’s experience of your illness. When you are struggling with a serious health condition, you have physical symptoms and, often, feel emotional turmoil. Your partner, as a caregiver and observer, has their own emotional experience. They may feel guilty about the good fortune of their relative good health. Because you’re suffering physically, they might feel like they can’t ask anything of you. This can lead to feelings of anger, resentment and even loneliness.
Remember that care partners might feel helpless and a loss of control when they witness your physical struggles. They might not get the validation and understanding they need from others. Try to be empathetic. Encourage your partner to find ways to connect with supportive friends and spend time doing activities that help them refresh and recharge.
4. Find a good communication style to use when your illness flares: All of us have moments when our symptoms are better under control. When you are in a flare, it is easy to indulge in a negative thought spiral. Be aware of how this may impact your partner and learn how to communicate what you need at these stressful times.
5. Be proactive about cancelled plans and other inevitable situations: It’s the night of an event you have both been looking forward to, but you’re not feeling well. Is it OK for your partner to attend without you? When do you need space or need some extra help? Communication is key and can decrease unnecessary conflict, especially if you talk through some of these scenarios before they happen.
Research has shown that patients who have supportive care partners have improved physical and mental health outcomes and feel more satisfied with their lives. Fortunately, the benefits of these long-lasting, committed partnerships can flow in both directions. Many care partners find a sense of purpose and meaning in their relationships, which can increase their happiness and yours.