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Ask the Experts about Spiritual Support and HIV

 

Wife feels left out
Apr 1, 1997

I am a married male with aids. The other day my wife told me that at times she feels left out. She said that she is in this with me, but everyone seems to overlook her and what she does for me. How can I make her feel differently? I have told her that she is a big part of my life and I don't think that this is happening on purpose, that the people who work with aids patients and people with aids are not used to working with married couples. Thanks for listening to me hope you can help me. Thank you Mike Arnold

Response from Rev. Pieters

This problem is not unique to heterosexually married couples, Mike. I could tell you many stories of people, (gay, lesbian, bisexual and straight), with many different life-threatening illnesses, who have experienced what you are describing. I remember learning in a pastoral care class at seminary, a few years before the AIDS era began, that it is often more difficult for the partner who is not sick, than it is for the person with cancer, heart disease, or some other chronic illness.

Part of the reason for this is that the person living with illness usually gets more attention simply because of his or her increased needs. The procedure for diagnosis, the treatment, the paper work, and the sympathy tend to be focused on the sick one. The well partner, on top of having to face all the feelings about watching a loved one go through this, is often expected to be the care giver: infinitely patient, loving, and attentive. This puts enormous pressure on the spouse, and many people forget to acknowledge and affirm this stress. And so care givers often have a hard time getting their own needs met.

There is some awareness of this issue among those in care giving professions, such as health care workers, chaplains, and therapists. These people are, after all, care givers themselves. In many community based organizations there are support groups not just for people living with HIV/AIDS, but for their spouses as well. These groups often meet at the same time, in adjoining rooms. If there isn't such a group in your area, maybe you are the couple who will get it started.

You are not alone in facing this problem. Your wife is experiencing a normal reaction. You seem to care about helping her with it. Make sure she knows you support her. Are you doing all you can to help her feel loved and appreciated? Are you her best advocate, assertively getting her needs met along with yours? You can educate others about your wife's needs by gently pointing out to those who can make a difference just how she's being left out. Talk to the professional care givers in your life about this. You might be pleasantly surprised to see smiles of recognition and understanding, followed by action that will help your wife, and you, get through this.



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