Coping with the Holidays with AIDS/HIV
Beginning around the second week of November a rather common ailment begins to manifest itself throughout North America. At the onset its symptoms may be vague, but can become quite specific and usually worsen through December, only ending in early or mid-January. This condition affects PWAs, seropositives as well as seronegatives, gay and straight. A growing discomfort that many experience as anxiety and/or depression is part of this syndrome. When you find yourself having strong negative reactions to the displays of holiday cards or even to the fabulous seasonal window displays, you know you're in the midst of "The Holiday Blues Syndrome." It's not uncommon for patients to tell me that they just wish they could wake up and have it be February. Having AIDS can certainly contribute to the difficulty and stress of this season.
What is it that causes so many people to have a love/hate relationship with the holidays? It's not merely a distaste for Bing Crosby singing "White Christmas," or the crass commercialization that has become a trademark of this time of year. For most the feelings go directly back to memories of their families and what it was like as a kid. These memories combined with the reality of relationships with family members today can result in this being a very difficult time of year. Very few people actually had either a Norman Rockwell image of growing up or parents like Jimmy Stewart in ``It's a Wonderful Life."
This time of year, it's natural to think about all the people we have loved who are no longer alive. Even if you are the most positive thinking person, doubts about whether or not you will be around for another holiday season can dampen your spirits. So it's not difficult to understand why "The Holiday Blues" often escalate into a major depression.
The end of the year is usually a time for reflection and self examination. If this was the year that you were diagnosed with AIDS or found out that you were HIV seropositive it may have been one of the worst years of your life, and you may be thrilled to see it end. If you were taking care of a beloved friend, family member or lover who has died, with whom you have traditionally spent the holidays, this year the holidays may not feel like a time to celebrate.
Most of us feel some level of confidence as adults who are successfully managing our lives. This is especially true if you have good friends, a satisfying relationship, a meaningful career, have taken charge of your health. Having AIDS or HIV understandably makes an individual feel more vulnerable and needy. If your family of origin has not historically been a source of support for you, then during this crisis it is very likely they will not now be very useful. Parents' expectations that their children will all flock to the annual family gathering often creates a very potent anxiety in grown children, who each year struggle with their ambivalence about whether or not to spend holidays with family. If the family is so dysfunctional that there has not been a traditional family gathering, this can I create another set of stressful feelings at this I time of year. It is not uncommon for grown children to report that a during a visit to their family they were treated as if they had never grown up. This is certainly not conducive to a healthy sense of self-esteem or the self-empowerment that is mandatory to living successfully with AIDS/HIV.
There are so many ways that this time of year can be particularly stressful for people living with AIDS and HIV. I know of one man, let's call him Mark, who for the past ten years has spent several days around Christmas with the aunt and uncle who raised him in Palm Beach County, Florida. A year ago last May, Mark got a call from his cousin who told him that her father began asking her about his health. So instead of directing her father's inquiries to the appropriate source, namely Mark, she told her father that Mark was HIV seropositive. Her father then told her that he didn't want Mark to stay in their home any longer since he was afraid of any of them catching "anything." This happened in 1990, thank you, Kimberly Bergalis.
Mark's cousin then phoned him to tell him what her father had decided. No amount of logic could persuade the uncle in Florida to change his position. A copy of GMHC's "Medical Answers About AIDS" did nothing to lessen the irrational fears. That was over a year ago, and understandably relations between Mark and his family in Florida have only deteriorated. But as the holidays approached this year, his pain and rage about this situation, and his loss, become renewed. As Mark put it, "Aside from the sheer irrationality of my uncle's position, what really hurts is that he thinks that I would place anyone at risk for infection if there was any chance that they could catch something from me."
One major aspect of the holidays is the ubiquitous party with all the consumption of alcohol and food that accompanies most holiday celebrations. If you are in recovery for alcoholism or an eating disorder, being surrounded by people getting chunk or stuffing their faces can certainly cause stress. In addition, if you are having AlDS-related gastrointestinal complications you may not be able to eat rich foods or consume alcohol even if you are not in recovery.
If you're a PWA living on disability or Public Assistance you do not have large amounts of disposable income to be spending on gifts. Thus the "Buy! Buy! Buy!" messages are constant and painful reminders of what it is like to be one of the "have note," or at least of having less financial ability than you did before being diagnosed. This is another way that the holidays are a rude reminder of the reality of living with AIDS.
Imagine the feelings that a woman with AIDS who has children must be having at this time of year. If she even has the strength (or cash) to prepare for the holidays, she must be experiencing a tremendous sadness wondering if this is going to be the last Christmas that she will spend with her children. If one or more of her children are HlV-seropositive she is struggling with the reality of their deteriorating health as well as her own.
So much of the stress experienced at this time of the year has to do with a combination of expectations and memories. The expectation presented by the advertisements, cards and music is togetherness and family. For people who grew up in an alcoholic family system, the holidays may only trigger memories of drunken parents, unpredictable violence and ruined holidays as a child. Even many years later it is not uncommon for individuals for whom this was the reality of family gatherings to have the holidays rekindle profound feelings of shame at how different their family was from 'the normal American family'. If you are a person living with AIDS, this is another way that you are now different from your family. This can lead to your feeling badly about yourself.
There is the expectation and assumption that everyone has a loving and accepting family with whom they can't wait to reunite at this time of year. Many gay people are only "accepted" at their families if they pretend not to be gay. This is certainly not an environment that lends itself to a relaxed time. How much more stressful it is for this person if his lover is not welcome, for instance, or if he feels that he can't "burden" his family with the facts about his medical condition.
Even if a family is accepting of a son's or daughter's homosexuality and welcoming, the holidays can be a source of stress that arises from having to decide where you (and possibly your lover) want to spend the holidays.
What to Do to Make it Better
My goal in this article is not to paint a depressing or bleak picture of living with AIDS/HIV during this time of year. But many people report that they feel like a freak if they are not consumed with the spirit that is supposed to accompany the holidays. I am attempting to articulate some concerns that hopefully will normalize a variety of reactions you may be having, and to validate that you are certainly not the only person who is feeling some ambivalence about this time of the year.
The important thing about the holidays is to structure them so that you can minimize any bad feelings that this time of the year may cause you and create ways that the events you choose to participate in are meaningful to you. The goal is to get through the holidays without becoming overwhelmed or uncontrollably anxious or depressed. So how can you maintain your equilibrium, serenity and enjoyment of this time of the year?
The answer lies in being very good to yourself. I know this sounds trite, but seriously, it is the only way to take care of yourself and prevent an avoidable holiday crisis. First of all, begin by reflecting upon who you want to share the holidays with, as opposed to who you think you should be spending the holidays with. This may be your family of origin or it may be friends or people in your support group. Sharing a meal with people who you feel truly love and accept you as you are is in itself very healing, empowering and calming.
In addition spend some time thinking about your life in an objective way. If nothing else, at least you are alive and able to struggle with all the conflicts that surround the holidays and having AIDS. No matter how bad off you might feel you are, there are always other people who are less fortunate. Chances are if you are reading this you are not homeless. Are you in the hospital or able to be at home? Are there people who are there for you?
Also you are a person living with AIDS in 1991, ten years into the epidemic. While we realistically do not yet have a cure, we certainly have an ever increasing amount of ways of preventing and treating opportunistic infections. Thus long term survivors are no longer a rarity. I'm not trying to sound like a "Polyanna." But I do strongly suggest that you try and focus on hope.... hope that there will be people with whom you can discuss your fears and concerns. Hope for continued and improved medical treatments. Hope for a continued quality of life with dignity. Hope that there will be people with whom we can share love. Taking responsibility for your life does not just depend on hope, but requires active participation and work on your part. There could not be a better holiday gift for yourself than renewing your commitment to being responsible for the quality and direction of your life. Let's see what 1992 brings.
Published in People With AIDS Coalition Newsline, Issue #72, December, 1991
It is a part of the publication People With AIDS Coalition Newsline.