My partner Aisha and I have been doing workshops for couples living with multiple sclerosis (MS). We’ve also been writing an advice column called Sex and Diabetes. We’ve learned a lot, but one message stands out. Chronic conditions are hard on relationships.
Staying together and living well together is hard enough for healthy couples. When you add in a significant chronic illness, it’s that much harder. People managing illness may need to pay more attention to themselves and a little less to their partners. Partners may not know what to do to help. So they may offer inappropriate help or fail to offer help that could make things easier.
When illness causes symptoms or disability, it gets even more challenging. If we (people with illness) lose interest in sex, or sexual function, that can cause an equal and more frustrating loss for them (our partners). (“I’m not even sick and I have to give this up! Not fair!”) If we have to cut back on work or housework or childcare, that can put more demands on our partners.
If we’re in pain, they may suffer with us. Or they may think we’re exaggerating. If we get depressed, which is pretty normal with illness, partners can get depressed too. Partners of people with diabetes have the same elevated rates of depression as people with diabetes do.
We don’t want them to ignore the difficulties illness causes for us, but we don’t want them to take over, either. We want support, but we want to maintain our independence. How confusing for them!
Who Gets Support?
I’d rather be the partner than the one who is sick. But the truth is that patients get all kinds of support. We have doctors, nurses, educators, therapists. We have support groups. We may get sympathy from family members and friends.
But partners have none of that. Aisha says that partners get lots of pats on the head — “You’re so brave,” “You’re really there for him” — but very little actual help.
I’ve led and spoken to all kinds of support groups for the last 22 years, and I know one thing. There are lots of support groups for people with problems, but very few for their partners. There is support, for example, for adult survivors of incest, but there are no support groups for partners of adult survivors of anything. (A few diabetes centers have a very few programs for families, but not many.)
Health-related problems can totally screw up a relationship, if you let them. One woman wrote us that, since her husband developed diabetes-related sexual dysfunction and depression, “silence, resentment and detachment have replaced what was a warm intimate marriage.” She says she can deal with the loss of sex, but not the “cold lack of intimacy.” She’s planning to leave him.
What Can We Do?
But none of this has to happen. For Aisha and me, communication is a constant issue — it’s hard to know how the other person feels, so we have to help each other. That means being open about our feelings. But how can you be open about your feelings when you’re not sure what they are yourself? Or when you’re afraid your partner will be hurt or angry if they know what you really feel? It’s a challenge, but we’re getting better at it.
It’s also important to give our partners thanks and praise for how they are coping, and for how their coping helps us. We have to appreciate what they are going through. And we need to let them know what we are going through.
Sometimes people should get help with these problems, but it’s not so easy. Few counselors or health-care professionals are comfortable or knowledgeable about chronic illness, though a few are. And if the problems involve sex, professionals and clergy will usually be even less comfortable. (I almost said “useless.”) It’s great if you know another couple with diabetes (or some other long-term condition) to share with. A support group like one of these might be a way to find one.
Is diabetes challenging your relationship? And don’t forget all those other challenges, such as money, that everyone has, and diabetes can make harder. What do you do? How do you talk about them? Do you feel like you could use some better communication skills, or maybe that your partner could? Let us know by commenting here.