Informal Support Groups
Valerie Granoff, LCSW is in private practice in Austin, TX. She specializes in working with adults, individually and as couples, on a variety of issues including fertility, relationships, grief, mood disorders and family issues. She may be reached by phone, 512-258-2812, or e-mail, email@example.com.
Creating Informal Support Through the Journey of Infertility
Navigating through the infertility process can, for many, be a long, arduous, and sometimes, painful journey. For those who have experienced a little or a lot, the days, nights, weeks, and months can seem very long. Some people choose to keep their struggle and experience with infertility private. They may feel that fertility is an intensely personal issue. They may feel embarrassed or ashamed because they have failed to meet their own or others’ expectations. Or, they may feel too vulnerable to handle the comments and feedback they will receive from others. They cope behind closed doors or, at the most, seek professional help as their only means of support. Although this works best for some, having informal support from friends and family can be a tremendous blessing.
The importance of asking for and receiving support
There has been mounting evidence that group support and social support in general can lead to a healthier view and better overall quality of life. We are social animals first and foremost, and, on many physiological and emotional levels, benefit from the warmth, understanding, and connection from those who know how to support us in the way we need.
Infertility changes you. It’s a time when you find yourself disconnecting from those you love the most, family and friends. Isolating and pulling away from the fertile world can feel better than remaining a part of “normal life”. It’s very common to want to be a part of everything but not want to engage in anything. And as the gap between you and the fertile world widens, it becomes harder to be around those who now seem to disappoint you at every turn with their inaccurate medical advice, offhand remarks, and insensitive responses to your grief. But it is at these moments you need to be connected to supportive, loving. and understanding people.
Given that the infertility journey can take months or even years, being isolated and withdrawn from others can lead to secondary problems of depression and marital distress. Chances are, those who care about you WANT to support you through this difficult time; they just don’t know how. Your challenge is to teach them how to be the best friend and loved one they can be to you right now. One thing that is certain– if you do not reach out, you are certain not to receive any support.
Who will be our best support?
How do we know who the best people in our lives to support us will be? Your spouse may be your best support and be there for you at all times, but a spouse is going through the process with you and only has a limited capacity to solely provide the intense and long-term support needed to go through the long journey. So, we look outside to see who might also be people in our lives who can sustain supporting us for the long haul. Take a step back and look honestly at the members of your family to see who can and who cannot be supportive. Are they judgmental, accepting, and able to listen without giving unsolicited advice? Can they understand? Can they truly listen and “make it about you”? Do they have a moral objection, and, therefore, cannot support you without conditions? Avoid those who cannot understand, say unhelpful things, or those who cannot provide comfort or support. Avoid those who cannot keep what you share confidential. The crisis of infertility or pregnancy loss can open your eyes to the true nature of others. Some people may surprise you and be better at supporting than you might have imagined. And others may disappoint you and be unable to provide what you need. One strategy may be to cast a big net and ferret out the friends who will be your best support. Another may be to try to reach out to one at a time and test the waters by sharing a little to evaluate the response before you dive in.
When to involve family and friends
Some couples feel a greater level of comfort at the beginning of their fertility journey and share their experiences openly. They may feel that it will be a short process and find it easy to include many as they share information. But as the struggle becomes longer, they may pull back and not have the same energy to manage the information or others reactions to it in the same manner. Conversely, some couples choose to wait to share anything until they have “news” or have consulted professionally about what the long-term impact of disclosure will be. But once they realize the journey is becoming long, they reach out for support because the emotional burden is too much to carry alone. When to involve friends and family is a very personal decision and depends upon your nature and the relationship and nature of those with whom you are sharing. Finding the balance between sharing enough to have support and not so much you feel out of control of the flow of information is the key to getting the most out of support from others.
How to tell people you are struggling with infertility
Understand that many families have never before experienced infertility and have no idea how it is treated or how they can help someone who faces it. Family members and friends require education. Provide books, magazines, and helpful websites. The more they know, the more helpful they can be. And once they have a general idea of what you are going through, communicate your story, what you need, and how you need it. Sometimes making a list of what you need is a good exercise for yourself and something to share in writing with others. If you fail to communicate your needs, your infertility can become a no-win situation for your friends and family. They may make assumptions about what they think you need and inadvertently upset you because they didn’t know. For example, if you want to be included when another family member or friend becomes pregnant, then make it known that you don’t want to be left out or treated any differently than before infertility. But if hearing this news would feel devastating given your current status, ask to be “taken off the list” when announcements are made. What you need may change from time to time. Continuing to communicate your needs over time can only insure that those around you have the best chance of success at supporting you as you need them to. And if communicating directly is too emotionally difficult, have someone else communicate for you–let your husband share your news of loss if it becomes too difficult while you are going through it.
How to cope with family and friends who “do not understand infertility”
No matter how much we try to educate, inform or share, there are still going to be those who do not understand infertility or how profoundly our lives are affected by it. This is one of the many losses experienced through the infertility process. For those who cannot understand, patience and forgiveness of them goes a long way. As long as they do not add to your stress and can find a way to at least accept what you are sharing, you will just have to create your support system to include a primary group of people whom you feel do understand and can provide the support you need.
What is helpful and what is not
Guiding friends and family to be the best support to you may sometimes mean educating them about what is helpful and what is not helpful to say or do. So often, our support people intend to be helpful in their responses to our struggles and losses but inadvertently hurt us with their words or actions. There many books and articles written with long lists of examples of the do’s and don’ts. Below is a sampling of what many say:
Silence, a touch and simple assurances go a long way
Compassion: “I am so sorry”
Empathy: “I can only imagine what this must be like for you”
Validation: “It sounds like this has been such a difficult road for you”
Support: “I am here for you anytime”
Disclosure of shared common experiences
Understanding if you do not want to attend triggering events like a baby shower or holiday gathering
Sending a sympathy card after a miscarriage
An employer offering time off as needed, and flexibility to accommodate scheduling needs
Minimizing the magnitude this experience or loss
Acting as if it didn’t happen
Withdrawing from or avoiding contact with you
Friends and family talking about you behind your back
Being told you’re selfish for not being happy about another’s pregnancy or new baby
Turning the conversation to their own experience “I know what you mean. My sister….”
Saying hurtful things that are intended to be helpful, such as “It’s God’s will”; “Just relax”; “Look at the glass half full”; “look on the bright side”;“I know exactly how you feel” when they have never been through what you have; “Go on vacation and you’ll get pregnant”; “You can always adopt and then you’ll get pregnant”; “It’s all going to be O.K.”; “You should feel…”
Whatever your experience, the more patient and direct you can be to guide others, the better the support they will be able to give you.
What to share, what “not” to share
What and how much to share of your own experience is a very personal decision. Sometimes it is easiest for you and your spouse to prepare responses that are consistent and informative – responses that satisfy a support person’s need to be informed and your need to maintain control over the information. There are so many facets of infertility that leave couples feeling out of control. The more you can control the information you share, the better you will feel as your process continues. In response to his daughter who miscarried and said that she shouldn’t have told anyone she was pregnant, her father said, “I would have rather known and lost than to have never known at all and been told after it was over”. Sometimes what to share and how much to share is a process learned over time through trial and error. However, if there is ever information that you do not want a child knowing in the future, it is better to keep those details private and confidential.
Working with other couples who are dealing with infertility
Formal support groups and peer support groups, such as RESOLVE, create an environment to be with other people saying the same things you say, feeling the same things you are feeling, and experiencing friends and family responding the same way as yours. Being with others going through similar experiences allows you to let your guard down and feel comfortable to express those emotions that have had to “go underground” in the fertile world.
It is important to remember that your fertility journey is a temporary one. Along the way, you may be surprised to find that some friends and family members become closer to you as you look to them for support, and some become more distant. In the end, you will resume your social life and become a part of it again. Your distance and caution with whom you let in will once again be replaced with a more spontaneous social existence.