On Sex, Love and Mental Illness Elliot Lazerwitz It is told in the Old Testament that Abraham and Sarah married young and vital. But years passed, and no children came along. When God's angel promised Sarah that she would bear a son at age 90, "she laughed" – no doubt from despair and disbelief. Eventually a son was born, Isaac – in Hebrew, "Yitzchak," meaning "he will laugh." Whether or not you are a believer, if you suffer from some brand of serious mental illness, and you are what is known as a "consumer" or "survivor" (or "c/s"), you may face a journey as long and discouraging as Sarah's. Your natural, normal hopes for happiness, lots of friends, or fulfillment in a career may have been dashed, and you're on the right path if you are slowly, hesitantly picking up the shards of those hopes. And just as Sarah laughed at God in cynicism and despair, you may be wondering if you can ever have the love of a partner again. You may be looking at people who have sexual relations, of whatever type, as from behind a glass wall. From all around you, ads and movies cry out, "love is for the young, and healthy, and pretty, and rich. It ain't for you". And you may have seen whatever fragile love affairs that did arise from the ashes of hospitalizations fall, wrecked, on the rocks of instability, of the drugs and the sexual malfunctions they may bring, on fear of commitment (or of being committed) and of being hurt. You may have given up long ago. But I'm here to say, Don't. Don't give up. We may be crazy, but we sure can love. Why do we have so much trouble trusting and loving? To some of us, the question isn't "why can't we fall in love, marry, maybe have a family?"' but rather, "after all we've gone through, why even bother?" Let me hazard an answer. You deserve it, and so do the rest of us. First of all, a lot of us became ill in the first place because we were badly damaged somewhere along the line – and I say this despite my belief in the validity of neurobiological explanations for MI. For many of us, this damage took the shape of sexual or physical abuse. Now, how on earth can a teenager or a grown man or woman trust someone of the opposite – or same – sex, when the person she or he trusted the most in the whole world turned around and betrayed that trust through a raping or beating? Kids are very trusting and fragile creatures, and maybe the tragedy comes when they learn to stop trusting. And adults are really kids inside. A second reason, it seems to me, for the fractured and scattered love relationships we see among MI people is the aftereffects of the steamroller of stigma. Now you can pretty much forget about forming a mature romance with someone while in the hospital, due to lack of privacy and the constant turnover in the people around you (the screams don't help much). It's an a priori that you be living in the community before you can build any sort of stability. But Rae Unzicker, a well-known c/s advocate once said something like, "It's hard to ask someone out on a date when you can't afford cabfare and you don't have a driving licence". Most socially accepted methods of entertaining a woman on a date are financially off-limits to MI men. If you're at college or vocational school, your tattered clothes may mark you as not exactly the Best Catch on Campus. If I am sounding facetious, I don't mean to be. I am dead serious -- about how the effects of mental illness and poverty, as well as clumsy social skills that you may have to painfully relearn, can stigmatize and mark the recovering c/s in a manner severely limiting most social interaction with the rest of the world. A third handicap we suffer on the Via Dolorosa to love and romance in recovery is the side-effects of neuroleptic drugs. Now, there is no doubt in my mind that medications are the foundations of basic mental health for c/s's. Without these things, we'd be confined behind moat and drawbridge for the rest of our mortal lives, and for this fact I am grateful. Ah, but we bear a heavy burden from the bloody things, which nobody can ever understand like we do. Here, I'll spotlight the sexual aspects of all this. Neuroleptics – and this includes the new generation such as Resperidone -- can devastate both sexual drive and sexual functioning. This can vary from person to person, but often affects romantic relationships. I know many c/s men who are hesitant to initiate a romance due fears of performance, and women who simply don't care if they have a sex life or not – they seem to have been shut down. (What a grim paradox it is that so many hospitals are rife with AIDS). These medications, with all their benefits, can sometimes bring about birth defects in the unborn children of pregnant women dependent on them. Some of these drugs can play havoc with women's menstrual cycle, with all the consequences. They are transmitted to babies through breastfeeding, rendering this healthy habit quite unfeasible. Last on this depressing list are secondary side-effects such as weight gain and general fatigue. It's not good form to be out on the singles market if you weigh 220 pounds and can't hack it on weekend hikes. Where do we go from here? All I can do is present me, myself, on one man's own journey to love. I say "man", not "consumer/survivor", because I am a human being before all labels, and I relate the viewpoint of a heterosexual man, because that is what I know. And it's all a journey; perfection is a destination that I, for one, seem unlikely to reach on this planet. I have learned that one should never give up hope for love. It may look outlandish, but it's there when you're ready. Consumer/survivors paradoxically have more to offer. We have loyalty, empathy, spirituality, staying power. These are no small things. In my case, they won me my wife! Now for a word about the sexual dysfunction that the drugs can bring about. This is a part of my journey I am just embarking upon. My wife (we've been married nearly one month at this writing) has shown the acceptance and affection not to judge me by my performance, and paradoxically this has improved our sex life a great deal. If your partner is mature enough to accept your illness, the sexual dysfunction can be worked through on this foundation. There is no denying that earthquakes centered around sex can rock a relationship. Your commitment to each other can resolve a lot of that. If you have access to a decent and skilled marriage counselor, it can resolve more; psychiatric social workers are a good place to start. If you can afford one, a good sexologist can help teach alternative means to give pleasure than simple penetration. (And don't be afraid to read around). Those of us with so-called "non-conventional" sexual identity issues bear the double stigma of mental illness and being part of the homosexual/lesbian/bisexual/transgender community. All too often, the MH system gives them no niche. For more cogent writing on this issue and others, click on Pat Deegan's excellent article Human Sexuality and Mental Illness: Consumer Viewpoints and Recovery Principles at: www.intentionalcare.org/articles/articles_sex.pdf Should we have kids: consumer/survivor couples and family planning Let's get personal. Right now, my wife of one month and I are undergoing a quite heartbreaking series of decisions. Due to various factors , such as distance from relatives, economic status, my age and stamina, and, primarily, our stability, we are tending towards a decision not to have children. We both love children dearly, and see in their conceiving and raising a facet of our very meaning and existence. Yet, when we size things up rationally, it doesn't seem wise, logical, or fair, especially to that dear, holy little being who we'd bring into this wild world. So where do we go from here, when it seems as though mental illness has robbed us even of the most elemental choice: to become parents? Dealing with my own personal pain is something I'll do elsewhere. What I'm trying to do in these electronic pages is to set forth a thesis of use to other c/s's who are or will someday face the decision we are facing. I know you are out there, somewhere, although both the consumer MI websites and the professional literature ignore you. I know, because here in Israel, I have encountered numerous couples like you. And I am speaking also to lesbian c/s couples who have decided to adopt a child. So here goes. When issues of raising a family arise, even the strongest couples are sorely tested…and all the more so in the case of c/s's, be they two c/s's or "mixed" couples. For comparison's sake, take a "normal," middle-class couple who give birth to a child with Downs' syndrome, or cerebral palsy. They may be shocked or deeply sad, but they likely will have the inner strength, (usually) the economic resources and the assertiveness needed to deal with the system. Their son or daughter will have a fighting chance to make it. Would ours? Would yours? MH professionals never tire of reiterating the statistical dangers associated with being a consumer/survivor and daring to bring children into this world. E. Fuller Torrey, in his book Surviving Schizophrenia (1983, p. 195) quoted the odds for a child being destined to develop schizophrenia, as 35% for couples in which both parents are schizophrenic, and 10% for those in which only one has that illness. He goes on to say, "the high risk of schizophrenia in the offspring of two schizophrenic parents would also suggest that therapeutic abortion might be considered..." (p. 195) Whew! Here we are trying to build our lives, and here these doctors are throwing statistics at us, seemingly designed to bow us down and break our spirits, then they drive their Mercedes sedans home to their glowingly healthy wives and children, waiting for them. We may choose to bring children into the world naturally (adoption is usually not an option). In doing so, we are taking an adult, mature responsibility upon ourselves. What factors can help us, and our child, make the journey, given the very real possibility that our son or daughter may undergo great suffering from young adulthood on? To my mind, this is what it takes if you are consumer/survivors, to successfully raise a child: 1. A marriage – yes, a legal marriage ---based on mutual commitment and respect. Let's face it, folks, these are the building blocks. If you're just living together, what does that say about your commitment to the child you may give birth to? And if you're playing cheating games or putting each other down, the healthiest child will have a hell of a home to grow up in. 2. Basic stability when it comes to mood swings, hallucinations, and interpersonal relationships. Yep, this is what it's all about. If you bring life into this world, you owe it a stable psychic environment. You have to be there for your child. If you are hearing voices that are not there, or brooding about how the CIA is poisoning your bard, you are in a lot of pain, but you are also being neglectful of your child. She needs you - - NOW -- and can't understand why you are so absent in her life. 3. Vocational training on the parents' part, to help ensure minimal economic welfare. Some sort of a trade, vocation, or marketable skill is a prerequisite to economic quality of life. It is imperative to get off of disability, if at all possible, in order to secure a better future for your child. We all know the obstacles in the way. Avail yourselves of any good vocational training, or take practical college courses if you can. I may be sounding preachy here, but YOU OWE THIS to your child, present or planned. 4. An open, positive approach to childrearing. Parents of disabled children have a special pain and a special challenge. All the more so, when the disorder may be hereditary. Here's where the optimistic frame of mind comes in. Whatever your child may be, whatever he may do, he is yours, he is a gift from Heaven. Don't judge him. Let your love be unconditional, and be strong together as a couple. Don't be afraid to cry, and seek out others in the same circumstances. And, remember E. Fuller Torrey's stats – even under the worse circumstances, it's 60-40 your child will turn out OK. (If you're in a dilemma, seek out good genetic counseling). To wind things up: God didn't make it easy for us consumer/survivors, and he saved the hardest part for those among us who dared to fall in love. Since nobody else I could find had addressed these issues on the Internet in a format accessible to consumer/survivors, I guess I invented the wheel with this article. That wheel may not have been perfect, but I did try to write from experience, to refer my readers to professionals, and at all costs never to advocate stopping medication. Let's face it, with all its commercialization, cruel side-effects, and openings for abuse on the part of unscrupulous practitioners, neuroleptic medication has no practical substitute in the early 21st century in regulating psychiatric illness. Mature, mutually-respecting love between two consumer/survivors can be far deeper and truer than many a so-called "normal" marriage. It is not true that consumer/survivors are "shallower" and "lacking in affect"; we appreciate one another's suffering in a way similar to Vietnam vets, Holocaust survivors or recovered alcoholics. Sometimes, the journey may require counseling, but always, it is rewarding. Don't brick yourselves in – TEAR DOWN THE WALLS! You can love, whatever and whenever that love will be. P.S.: A word on contraceptives There are two things you should do, if you choose to initiate sexual relations with your partner. First and foremost, both of you should get tested for AIDS. This may seem degrading, but it is not. In truth, it is an act of love. It means that you and your partner care enough for one another to erase any possibility, no matter how tiny, that this grim disease might affect you. Second, with heterosexual couples, it's essential that the female partner consult a gynecologist who has some knowledge of psychiatry, to find the contraceptive(s) which are right for her. Often, the "pill" or other hormonal methods may be inappropriate, due to their mood effects. There are options available for healthy women that are inappropriate for consumer/survivors. A proper one must be chosen – together with condom use on the part of the male – to avoid unwanted pregnancy, and the tidal waves it can cause. Elliot Lazerwitz February 2002 Comments and feedback welcome at: lazerwitz_elliot@hotmail.com