Friday, May 21, 2010

Infertility Counseling: Getting Started

Since the recent publication of my book When You're Not Expecting, many people have approached me to ask about the counseling experience: How to know when counseling is a good "next step," how to access a counselor experienced with infertility issues, what costs may be involved, and what to expect of the counseling experience. The common thread that seems to be present in these conversations is " Since I feel like I'm going crazy, is counseling likely to be of any help?"

These are very important questions. Since I have provided counseling to hundreds of couples and individuals grappling with infertility, I know all too well the kinds of barriers that can prevent people from seeking help for the emotional fallout of infertility. In the coming weeks I will devote several blog posts to various dimensions of infertility counseling. Today we'll begin with how to get started in this process.

First, I think readers would agree with me that the infertility experience is filled with stress. Who to tell, how much to tell, how to cope with the fertile world, how to communicate with loved ones and health care providers, how to juggle treatment and personal life and, above all, how to bear the interminable waiting. This list could be much more extensive, but you get the idea: it doesn't take long for infertility to become a ruling force in your life. And this is an experience for which you probably have had no preparation. This also is an experience for which you lack a road map, so looming out there in the future is the fear of the unknown and whether you'll have the emotional strength to emerge from the infertility journey unscathed.

Anyone who has been infertile for any period of time will be quick to say that the experience changes you. The question you will want to ask yourself is: at what point in this process do you want to seek out a counselor to help you cope more effectively with the inevitable stresses? Knowing that infertility will change you, do you want a counselor by your side to help you find new ways to handle the present and to think about the future? And do you see counseling as something for yourself, or is your partner also interested in being involved?

Since I happen to be a believer in keeping a finger on one's emotional pulse, I would first encourage you to discuss with your partner how each of you is handling the stresses of your infertility. What are those stresses for each of you? What do you find difficult to discuss with one another? What are your worst fears about the way infertility will affect you? What sources of support do you have? And there are probably other questions that will come into your conversations once you begin this process. If you find yourself talking pretty openly and honestly with some degree of hopefulness, then you can give yourselves high marks for empathy and self awareness. You should make your own assessment about whether any issues are causing you emotional pain and, if not, there are several options to consider. First, continue to keep open communication with your partner about these topics. Another is to join a local infertility support group. RESOLVE's website lists support groups by regions in the US, and the Infertility Awareness Association of Canada (IAAC) does as well for Canada. In addition, many communities have their own peer-led support groups. And, further, many infertility clinics offer support groups for their patients. A third option is to make an initial appointment with an infertility counselor; this will give you an opportunity to check out whether this is someone with whom you feel comfortable and with whom you believe you could communicate about difficulties when they arise. It will give the counselor an opportunity to see you and your partner at a time when you are managing well. It will give all of you an opportunity to discuss the likely future availability of the counselor, as well as practices that you need to know about: fees, insurance coverage, length of sessions (usually 50 minutes), whether the counselor has a preference for working with individuals vs. couples, etc. If this visit does not make you feel as though this counselor is the person with whom you would like to work in the future, then continue your quest until you find someone in whom you have more confidence. Waiting for a crisis is no way to pursue this quest.

So, what if your conversation with your loved one is filled with fears, misgivings, tears or apprehensions on at least some of the topics you are discussing? This would suggest to me that at least one of you is hurting, at least one of you feels inadequate or confused about how to soothe your partner, and at least one of you is feeling emotionally overwhelmed on some level. Whether this means that you rarely discuss these issues with one another (usually for fear that the tears will turn to torrents), or that you are often reaching out for comfort that cannot be met by your partner alone, these are signals that you need more emotional support than you are getting.

Counselors are accustomed to having clients who are tearful on their first visit, who say "I think I'm going crazy!" by way of introduction, and who are searching for coping skills that elude them in the midst of their infertility. So if the description in this paragraph feels familiar, your options would include inquiring about whether your infertility clinic or physician's practice can provide or refer you to infertility counseling services. If the answer is no, then you will need to do some detective work in your community to locate a counselor. Resources to help with this may include the medical social worker at an area hospital, your religious leader, any infertile friends in whom you have confided, as well as listings that may appear on the websites of RESOLVE or IAAC. Even contacting a number listed under "mental health services" in the yellow pages or googling infertility counselors with the name of your town may yield one contact number that could give answers to your questions about whether there are experienced infertility counselors in your community. This can take both time and patience, but it is well worth the effort if you connect with someone who can help you with the emotional burdens you are carrying.

Some individuals or couples are so consumed with sadness and depression that it may take an emergency to jolt them and loved ones into recognizing the depth of their pain. Under these circumstances, when inability to function or a suicidal gesture are clear emergency signals, the path to help must be more immediate. Here is when an initial evaluation by a psychiatrist is an important first step, with the likelihood of prompt follow up by a mental health professional. The initial contact may be through a telephone call to your local mental health clinic where you firmly request an immediate appointment (that very day) or, if that is not successful, a trip to the emergency room of your hospital where a psychiatric evaluation should be available. It is far more important to get immediate services in a crisis, and ultimately to learn about the counseling resources in your community once the initial crisis has been addressed.

So, very briefly, let me tell you a bit about the different kinds of counselors (some will refer to themselves as therapists) , including their titles and their training:

  • Psychiatrists, who are medical doctors, can offer mental health diagnoses and can write prescriptions for anxiety, depression and other conditions. It is important to inquire of the psychiatrist, and of your pharmacist, about the effects of any prescribed medication on a developing fetus. Some psychiatrists offer counseling, but it is more likely that a psychiatrist will refer you to one of the professionals listed below.

  • Psychologists, who have master's degrees and often Ph.D.s, cannot prescribe medication. They have counseling expertise gained through their education, internships and post-degree supervised clinical experience.

  • Social workers, who have master's degrees, have acquired their counseling expertise through clinical supervision during internships and possibly post-degree experience. Social workers often have skills in individual and family counseling, promoting couple communication, addressing issues of loss, advocacy and helping clients to find appropriate community resources.

  • Marriage and family therapists, who have master's degrees, have acquired their counseling expertise through clinical supervision during internships and possibly post-degree experience. They provide individual counseling, couple counseling and family counseling.

It is possible that any of the counselors listed above, who are licensed in their state of residence, may be eligible to receive insurance reimbursement for providing services to you. This differs in each location, and a call to your insurance provider should be able to determine whether the counselor is considered a provider in their system. If money presents a barrier, there are several options you can pursue. You can ask a counselor whether s/he can offer you a sliding fee scale (this means fees will be flexible depending on your financial circumstances). If individual counselors in your area cannot offer this flexibility, sometimes agency counselors (at Family and Children's Services and Mental Health Agencies) can offer a sliding fee scale. Should none of these options be available, I would suggest a very open conversation with your counselor about an initial partial payment plan, with a repayment plan built in. Another option might be to see the counselor less frequently than weekly, thereby incurring less cost.

I know for any readers who looked at my "getting started" title and expected to whiz through this blog, you might be feeling as if there's a lot to this process. But remember, what I have tried to do here is to depict the process in enough detail so that you could see your own circumstances in the options I am presenting. So, in truth, you don't need to digest everything in today's blog -- just the parts that apply to you.

And, while you're digesting, I'll mention that my book offers therapeutic tips at the end of every chapter. So while you are considering whether/when to seek a counselor, you may find the book helps to acquaint you with the process of learning effective coping and communication skills over the course of the infertility journey. In my next blog I'll review what you can anticipate from the counseling experience, so you can feel more familiar with what to expect.

Tuesday, May 11, 2010

Post Mother's Day Reflections

For many women with infertility, the week after Mother's Day feels like a time to let out a deep breath. We haven't just been holding that deep breath on the holiday itself. No, we took that deep breath some time in early April when the first advertisements from retailers began to remind us that Mother's Day was approaching. And we, unlike the mothers in our midst, began to wonder how we would survive the holiday this year.

So did we survive it? How did we handle it? And why does it matter? I'll start with why does it matter. If you emerged this year emotionally unscathed, then you probably entered the Mother's Day season with a mind set or an action plan that worked for you. If you emerged emotionally wrung out, then this is the very time to sit back, breathe deeply, and reflect on what you can do now to learn from this year's difficulties. I know, I know, you have every hope that by Mother's Day next year you'll be able to celebrate with a baby in your arms. However, we all know infertility can be a long journey, and it's worth it to store this year's reflections as important insights into how you handle your vulnerabilities and how you try to anticipate emotional potholes.

So when you reflect on how this Mother's Day could have been less painful, given your infertility, what thoughts come to you? Over the years my clients and I have discussed everything from being caught by surprise, to feeling "out of place" amidst one's parents and fertile siblings, to feeling smothered by the presence of infants and toddlers at family celebrations, to feeling torn emotionally that you want to honor your mother (or mother-in-law) at the same time you want to bolt from the scene. Couple this with the bouquets of flowers that you send but don't receive, the special attention some religious leaders give to mothers in their congregations, and the impossibility of finding a quiet restaurant where you and your partner can have a calm meal (without being greeted cheerily by a staff person who wishes you a happy Mother's Day), and this day clearly emerges as filled with emotional challenges.

Each year I have tried to find a creative way of sensitizing others to the pain felt by families without mothers on Mother's Day. In an earlier blog I mentioned how, years ago, I spoke with the religious leaders in my community in February to help them be more sensitive in their Mother's Day remarks. This year I approached my local newspaper and asked that they do a feature on how infertile people experience Mother's Day, and the result was a full page spread that I have heard touched many hearts in our community. And in the years in between I have politely reminded well wishers that my infertility makes this holiday difficult (which at least made them aware that infertility hurts, and at best may have made them more cautious about assuming that every female is a mother). Also this year, in the two university courses on family relationships that I teach in the spring, I have included a unit on infertility and used a case study focusing on Mother's Day to bring my points home. So, for those of you who want to take on this holiday in the spirit of public education, there are all sorts of ways you can sensitize others. Begin thinking now how you (perhaps with a few friends) can reach out to make a difference.

But if you, like many readers, are not in the mood to be quite this vocal, think back to what you wish would have happened differently this year. Talk with your loved ones about how you need to approach this holiday differently next year if you do not yet have a child. Make some notes to yourself, so you can remember these reflections over time. Think about how you can reframe this day in the future so that it resonates as little as possible with feelings of loss and, instead, provides opportunities for you to feel hopeful or thankful for some aspect of your life. But DO think about this now, because when next year comes you may want to feel more emotionally steady as you enter the holiday fray. Ideas and strategies that worked for you this year are welcome! Feel free to make a difference by sharing them.

Thursday, May 6, 2010

Women with Infertility: We're Everywhere!

In the last month since the publication of my book When You're Not Expecting, I've been amazed at the number of women who have confided in me their personal stories of infertility: women I know well, women I know only slightly, and women I am meeting for the first time. For some, their infertility is recent. For others their infertility is an indelible part of their past. Yet all of these women told me (even as their eyes filled or their voices trembled) how emotionally isolated their infertility made them feel. In addition to the women who had been diagnosed with infertility, another group of women sought me out after reading my book. These women were students, colleagues, reporters, friends, health care professionals, former college classmates, and relatives, all of whom had read my book and wanted my thoughts on how they could be more sensitive to women who have shared news of their infertility. So here's the dilemma -- how can these two quite different groups come together to have a compassionate conversation about the emotional challenges of infertility?

It seems to me there are several barriers we need to address: defining what is infertility, clarifying what behaviors are supportive, and shifting the conversation's focus as the infertile person's circumstances change.

When most people think of infertility, they tend to think of a couple's inability to get pregnant. But those of us who are deeply involved in infertility experiences know that women with the following circumstances also consider themselves to be infertile:
  • an ectopic (tubal) pregnancy
  • a partner diagnosed as the cause of the couple's infertility, even though the woman herself is considered fertile
  • a molar pregnancy
  • a pre-natal diagnosis that causes the woman to decide to terminate the pregnancy
  • a miscarriage or a stillbirth
  • secondary infertility

So when you share with friends, co-workers or loved ones that you are grappling with the sadness of infertility, they may not grasp that your circumstances fall within their definition of infertility. Broadening infertility to include pregnancy loss, a partner's diagnosis or secondary infertility will help others more fully to appreciate the sadness and frustration of your current situation.

Defining infertility may also involve being clear about the treatments that you/your partner are pursuing. Most fertile people are out-of-the-loop when reproductive technology is the topic under discussion. They may believe that IVF can be affordable and effective for everyone, that adoption "cures" infertility, that taking a vacation is a recommended clinical get the picture. It will fall to you to be as informative as possible, without offering so much information at once that you confuse your listener. That includes correcting misconceptions, as well as offering educational information about where you are in the diagnostic/treatment process.

A second barrier that may stand between you and a compassionate response is uncertainty about how to respond to your news. Especially around information that is perceived as having a sexual component, listeners are cautious about violating your privacy. This is the time to thank them for being interested in your infertility, to offer to answer any questions, and to suggest ways that they could be helpful now that you have shared this news with them. Depending on whether the person is your boss or your sister, there may be a necessity to have you clarify what you need from this person at this time in your life.

And that brings us to the question about how to handle infertility and your relationships over time. For starters, you are learning as you go along who you can count on for what. Some friends who are great for certain forms of support won't want to offer other forms of support; some who are compassionate early on will get tired or emotionally disconnected over time; some will find their own lives consumed by the joys of their own fertility and feel awkward around you; some will be there for you through thick and thin. In anticipation of this, you'll want to do several things to keep your support system resilient.

  • Remember to relate to your friends as they've been relating to you: offer help when they need it, keep the flow of information about both of your lives, and allow them to distract you from your infertility whenever you're receptive.
  • Try not to have your infertility define you in the eyes of others. Express appreciation when they inquire about diagnosis/treatment/waiting/etc., but feel free to turn the topic of conversation away from your infertility to another aspect of your life. Of course, if you've just gotten your period, a discouraging test result, a baby shower invitation, or other news where you need a sympathetic ear, you are entitled to ask for support. But every inquiry needn't turn into a major dialogue about your infertility.
  • Even though you feel as if your life revolves around appointments, injections, mood swings, medications, etc., do what you can to plan with your partner, friends and loved ones some distractions that you can look forward to: a spring picnic, a new restaurant, a walk in the woods, a weekend out of town, a potluck dinner, a birthday get the picture!
  • Try to cultivate relationships with infertile friends. These folks won't need much prompting to understand why you are bummed out with a particular piece of medical news or the poor outcome of a medical procedure. In addition, adding to your friends adoptive parents and couples who are childfree by choice will expand your awareness of options these couples have pursued in their lives, perhaps with infertility as a backdrop.
  • As time passes and you find yourself and your partner facing new decisions about future options, consider which acquaintances may be most helpful in talking about possible new directions. Some will be more helpful than others, and you may want to think about this before asking them to weigh in with their reactions to new choices that you are facing.

So, as we know that infertility affects far more people than would initially be apparent to us, and as we realize that many people are silent or awkward because they need a little help to know how they can help, I hope you can envision yourself reaching out in new ways to people who have the capacity to be supportive, both emotionally and practically. Feel free to weigh in with strategies you have used to generate support from people in your life!