How does chronic illness affect intimacy?

When one partner has a chronic illness, incredible stress can be put on intimate relationships. Some statistics place the rate of divorce at 75% when one partner is chronically ill! There are many reasons for these statistics, and lack of physical intimacy is certainly one of them.

Good communication skills are essential for partners to sustain a relationship in the face of chronic illness.

The illness itself and the side effects of medications can cause physical changes in your body that leave you feeling unattractive and undesirable. Extreme changes in weight, deformities, scarring from surgeries and procedures, hair loss, and other changes leave you wondering why anyone would even want to be intimate with you. If you don't like yourself, why would anyone else like you? Rather than risk rejection, you avoid the issue altogether. When you do that, you are making a decision for your partner. You have no right to do that. The result is that your partner feels rejected, and the relationship begins to deteriorate. Good communication skills are essential for partners to sustain a relationship in the face of chronic illness. If those skills are not already in place, go see a counselor who can teach both of you how to make your feelings and needs made known in healthy ways.

The constant pain and fatigue that often accompany chronic conditions are not conducive to intimacy, especially if intimacy is defined as an athletic sexual event rather than an emotional one. Redefining your perception of intimacy as close human contact, physically or emotionally, rather than a physical act, changes both partners' expectations. The sick partner may long to be held, cuddled, or kissed gently but is afraid to make any overtures out of fear that the healthy partner will take these overtures as a signal that more is to come.

Of course, the healthy partner may be very happy to hug and cuddle if that's what comforts the sick partner. But no one will know what the other is thinking or what the other needs without those needs being spoken.

The use of "I" messages is especially important here. "I would like to snuggle with you for a while. I feel good when we do that. I am afraid that you will think I want more, and right now, I'm just not up to that. Are you OK with this?" Again, a visit or two to a good mental health counselor can work wonders for communication skills that will preserve the relationship.

Pain can be a particularly difficult obstacle to physical intimacy. If this is a problem for you, talk to your doctor. He or she may have suggestions. You are not the first person to experience intimacy problems related to your chronic condition, and you won't be the last. You deserve to have as full a life as you can. Why not ask for the help you need? If your doctor is unable to help you, consult a physical therapist. You will be amazed at what you learn. A woman who had both hips replaced when she was only 22 (she's now in her late 40s) learned that having sex in the bathtub works best for her, as the water minimizes weight!

Should I tell people about my condition?

Chronic illness can be visible or invisible. You can't hide the deformities that come with rheumatoid arthritis[1] or the rashes that accompany psoriasis[2]. But many chronic illnesses are not apparent to the casual observer. If you have invisible chronic illness, you are faced with the "to tell or not to tell" dilemma. The decision of whether or not to disclose has to be taken on a situation-by-situation basis.

Of course, you will want to tell those people who are close to you like spouses, parents, siblings, and adult children. If you have young children, you will want to be more guarded, giving them information on a need-to-know basis. Children need to be children and not your confidant, primary caregiver, or a substitute for a support network. They do need to know, however, that there are times when you may not be able to keep up with what other parents are doing. In all your relationships remember that you are more than your illness. Don't let your condition become the center of your relationships.

One of the frustrating things about chronic illness is unpredictability. You make plans for next week, only to find that on the day of the event, you are just too tired or sick to follow through. If your friends and acquaintances don't know about your condition, they will probably lose patience with you sooner or later. If they know about your illness, there is a better chance that they will understand. Some people will become over-protective. They will remind you to rest, eat, or whatever, leaving you feeling like you are a helpless child. Some people, however, won't get it. Convincing them is not worth your limited energy. The decision to disclose is very personal. Remember that you can't control how others will react or how they will treat you. The only reactions that you can control are yours.

Casual acquaintances really don't need to know about your health. You don't tell them how much money is in your bank account, or how often you floss your teeth, or about your crazy Uncle Joe. If you find yourself telling relative strangers about your illness, you might want to think about the possibility that you are letting the illness define who you are. When mere acquaintances ask how you are doing, they are being polite and not asking for a laundry list of your symptoms and ailments or a graphic description of your latest medical procedure.

Chronic illness in the workplace is a tricky issue. Employers and bosses, just like anyone else, will have preconceived notions about your illness. If you are doing your job and don't need special accommodations, there is no good reason to disclose your illness in the workplace. Even if you have a great relationship with your coworkers, most of them are not close friends or family and do not need to know the details of your physical condition. If you do need special accommodations, then disclose to only those people who need to know. Even though you are supposed to be protected under the Americans with Disabilities Act, the sad truth is, if your illness is perceived as a burden to your employer they will find a way to get rid of you. The best advice here is to be guarded when it comes to disclosing in the workplace.

  • [1] An autoimmune disease in which the immune system attacks and destroys the joints.
  • [2] Chronic, autoimmune disease that appears on the skin. It occurs when the immune system sends out faulty signals that speed up the growth cycle of skin cells.
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