Infertility

What it Feels Like


This material was prepared by Ferre Institute, Inc., a non-profit organization dedicated to promoting the health of individuals and families by providing information and education on genetics, infertility, environmental exposures, and family health history.

I want to share my feelings about infertility with you, because I want you to understand my struggle.
I know that understanding infertility is difficult; there are times when it seems even I don’t understand. This struggle has provoked intense and unfamiliar feelings in me and I fear that my reactions to these feelings might be misunderstood. I hope my ability to cope and your ability to understand will improve as I share my feelings with you. I want you to understand.

You may describe me this way: obsessed, moody, helpless, depressed, envious, too serious, obnoxious, aggressive, antagonistic, and cynical. These aren't very admirable traits; no wonder your understanding of my infertility is difficult. I prefer to describe me this way: confused, rushed and impatient, afraid, isolated and alone, guilty and ashamed, angry, sad and hopeless, and unsettled.

My Infertility makes me feel confused. I always assumed I was fertile. I’ve spent years avoiding pregnancy and now it seems ironic that I can’t conceive. I hope this will be a brief difficulty with a simple solution such as poor timing. I feel confused about whether I want to be pregnant or whether I want to be a parent. Surely if I try harder, try longer, try better and smarter, I will have a baby.

My infertility makes me feel rushed and impatient. I learned of my infertility only after I’d been trying to become pregnant for some time. My life-plan suddenly is behind schedule. I waited to become a parent and now I must wait again.  I wait for medical appointments, wait for tests, wait for treatments, wait for other treatments, wait for my period not to come, wait for my partner not to be out of town, and wait for pregnancy. At best, I have only twelve opportunities each year. How old will I be when I finish having my family?

My Infertility makes me feel afraid. Infertility is full of unknowns, and I’m frightened because I need some definite answers. How long will this last? What if I’m never a parent? What humiliation must I endure? What pain must I suffer? Why do the drugs I take to help me, make me feel worse? Why can’t my body do the things that my mind wants it to do? Why do I hurt so much? I’m afraid of my feelings, afraid of my undependable body, and afraid of my future.

My infertility makes me feel isolated and alone. Reminders of babies are everywhere. I must be the only one enduring this invisible curse. I stay away from others, because everything makes me hurt. No one knows how horrible my pain is. Even though I’m usually a clear thinker, I find myself being lured by superstitions and promises. I think I’m losing perspective. I feel so alone and I wonder if I’ll survive this.

My infertility makes me feel guilty and ashamed. Frequently I forget that infertility is a medical problem and should be treated as one. Infertility destroys my self esteem and I feel like a failure.Why am I being punished? What did I do to deserve this? Am I not worthy of a baby? Am I not a good sexual partner? Will my partner want to remain with me? Is this the end of my family lineage? Will my family be ashamed of me? It is easy to lose self-confidence and feel ashamed.

My infertility makes me feel angry. Everything makes me angry, and I know much of my anger is misdirected. I’m angry at my body because it has betrayed me even thought I’ve always taken care of it. I’m angry at my partner because we can’t seem to feel the same about infertility at the same time. I want and need an advocate to help me.

I’m angry at my family because they’ve always sheltered and protected me from terrible pain. My younger sibling is pregnant; my mother wants a family reunion to show off her grandchildren and my grandparents want to pass down family heirlooms. I’m angry at my medical caregivers, because it seems that they control my future. They humiliate me, inflict pain on me, pry into my privacy, patronize me, and sometimes forget who I am. How can I impress on them how important parenting is to me?

I’m angry at my expenses; infertility treatment is extremely expensive. My financial resources may determine my family size. My insurance company isn’t cooperative , and I must make so many sacrifices to pay the medical bills. I can’t go to a specialist, because it means more travel time, more missed work, and greater expenses. Finally, I’m angry at everyone else. Everyone has opinions about my inability to become a parent. Everyone has easy solutions. Everyone seems to know too little and say too much.

My Infertility makes me feel sad and hopeless. Infertility feels like I’ve lost my future, and no one knows of my sadness. I feel hopeless; infertility robs me of my energy. I’ve never cried so much nor so easily. I’m sad that my infertility places my marriage under so much strain. I’m sad that my infertility requires me to be so self-centered. I’m sad that I've ignored any friendships because this struggle hurts so much and demands so much energy. Friends with children prefer the company of other families with children. I’m surrounded by babies, pregnant women, playgrounds, baby showers, birth stories, kids’ movies, birthday parties, and much more. I feel so sad and hopeless.

My infertility makes me feel unsettled. My life is on hold. Making decisions about my immediate and my long-term future seems impossible. I can’t decide about education, career, purchasing a home, pursuing a hobby, getting a pet, vacations, business trips and house guests. The more I struggle with my infertility, the less control I have. This struggle has no timetable; the treatments have no guarantees. The only sure things are that I need to be near my partner at fertile times and near my doctor at treatment times. Should I pursue adoption? Should I take expensive drugs? Should I pursue more specialized and costly medical intervention? It feels unsettling to have no clear, easy answers or guarantees.

Occasionally I feel my panic subside. I’m learning some helpful ways to cope; I’m now convinced I’m not crazy, and I believe I’ll survive. I’m learning to listen to my body and be assertive, not aggressive, about my needs. I’m realizing that good medical care and good emotional care are not necessarily found in the same place. I’m trying to be more than an infertile person gaining enthusiasm, joyfulness, and zest for life.


Ferre Institute, Inc.
124 Front Street
Binghamton, NY 13905
Phone: 607-724-4308
Fax: 607-724-8290
www.ferre.org

Why Do Fertility Treatments Cost So Much???

An average fresh IVF cycle using your
own eggs and your husband's sperm
costs $14,000 - $17,000! Each time
you do it!
Some insurances cover it and some
do not.

If you need donor "anything",
your insurance may cover
it or they may not cover
a thing and then you are
expected to pay out of pocket!

Isn't it bad enough that you are
having so many problems getting
pregnant?  And then to top it off,
you finally go for fertility
treatments and find out it will cost
you an arm and a leg (not that you
wouldn't give a limb to get
pregnant!)

How the hell is that fair?
Is it fair that you have no eggs
or your eggs are too old
or your husband has no sperm?
Is it fair that you physically cannot
carry a pregnancy?

Isn't enough that you have been
on the "trying to make a baby"
merry-go-round with countless
months and years of
disappointment?

How are people supposed
to come up with that kind
of money?

Yeah, celebrities do it (and
pretend they don't)
but they make ridiculous
salaries.

Instead of happily shopping for
baby clothes, nursery furniture,
awesome toys and signing up for
all those "wish list" items on
your baby registry you have to make
a freaking decision such as "should I buy
a house or should I 'buy'
a pregnancy????

No one should have to make a
decision like that..............

If insurance pays for birth control,
abortions, Viagra, difficult pregnancies
and neonatal care, they should have
to pay for reproductive technology.
Otherwise that is discrimination
against women who cannot get
pregnant in the conventional way.

Excellent Article To Help Parents Explain the Story of their Donor Conception


PEDIATRIC NURSING/May-June 2012/Vol. 38/No. 3 

 The Child’s Advocate in Donor
Conceptions: The Telling of the Story
by Kris A. Probasco


Traditionally, to create a child, there is a joining of
a woman’s egg and a man’s sperm via sexual intercourse.
When, by choice or by happenstance, this
process is not available, modern persons have
access to additional methods. These methods stem from the
donation of materials originating in others, a donated egg,
donated sperm, or more recently, a donated fertilized
frozen embryo. The donations range from easily obtained
material (sperm) to complexly obtained material (eggs) to
material created via a large sum of money and effort by the
donors (embryo) (see Figure 1).  As in traditional adoption,
the donor procedure of creating a child involves a minimum
of two parties, one in whom the gamete material was
created and one who accepts this material to obtain a child.


Figure 1.
Definitions
Donated Egg: Transfer of preovulatory oocytes from voluntary
donor to a suitable host. Oocytes are collected through an invasive
procedure, fertilized in vitro, and transferred to the host.
Donated Sperm: Collection of ejaculated sperm from voluntary
donor used to fertilize egg in human host or in vitro.
Donated Embryo: Embryo that has been created through in
vitro fertilization in excess of what was used by the gestating
woman. Often frozen for further use, recent trend to donate for
adoption by others.

The history of donor conception dates back to 1884,
when the first case of donor insemination was documented.
At that time, physicians were using their own sperm for
conception (Snowden, 1983). The first documented case of
egg donation was in 1983 (Buster et al., 1983), and embryo
placement and adoption began in 1997 (“Embryo adoption
becoming the rage,” 2009). Donor conceptions are provided
for couples with male or female infertility, individuals
who have a genetic disorder they do not want to pass on to
a child, second marriages where there was a vasectomy in
the first marriage, single women, and the lesbian and gay
population. Estimates are that thousands of children are
born by donor conception each year in the United States,
more than the number of infants placed in traditional
adoptions.
This article suggests the assistance families will need in
sharing the stories of their children’s beginnings with
them. This author believes that keeping origins secret can
be detrimental to a child’s mental health, and that open
donation, similar to open adoption, is most helpful in the
healthy family system.                                                                                                                          

Preparing for Parenthood
Unlike the traditional method of pregnancy in which
one-third of all pregnancies are unplanned, using donor
material takes some intention. An essential step in the
process is coming to terms with the choice to use donor
material. Parents must accept that this chosen alternative is
different. Grieving the loss of personal ability to create the
genetic offspring, the loss of the biological child or a marriage
or relationship that would create a genetic child is an
important factor in being prepared to parent children
through a donor conception. Mental health therapists have
found through experience as counselors to families that
without preparation of the parents through education and
courses, the losses tend to become the responsibility and
burden of the child. Mental health therapists believe a child
should be born into a family without having to cure the situation
that brought donor conception to the family. For
many, a history of infertility has preceded the decision for
a donor conception. Acknowledgement and acceptance of
all losses connected to the infertility struggle is a part of
parenting preparation.
     For couples planning to parent a child by donor conception,
it is vital that both individuals emotionally accept the
decision for a donor. The infertile couple needs assistance
from others to make the conception medically possible.
The nature vs. nurture debate has been illuminated by years
of adoption research (Bouchard, Lykken, McGue, Segal, &
Tellegan, 1989) that who we become is approximately 50%
nature and 50% nurture. Those who choose sperm or egg
donation must accept the significance of the genetic component                                                           in their child’s life. For an embryo placement, the
child’s complete genetics are connected to another family.
Thus, it is important that parents learn as much as they can
about the donors they are ‘inviting into their home,’ accept
that another person or family is helping to conceive the
child, and that the child may have life-long genetic, social,
and emotional connections to that family.
     Earlier in my career as a social worker in the infertility
and donor world, there was very little information, if any,
provided regarding the anonymous donors. Sperm and eggs
came privately or with very basic medical information. This
has now changed. Resources are now available to select a
donor’s genetic material based on social, psychological, and
medical information, including pictures, videos, and audio
tapes, and identified donors who can be available for medical
emergency and as social contacts at a later date. In
embryo placement, there are open arrangements so the
genetic family and prospective adoptive family know about
each other and continue to be a resource for both families
as their children grow in understanding their particular stories.


Education
Whether traditional adoption, donor conception, or
embryo placement, education of prospective parents is
mandatory. Educational resources are increasingly available,
including books, children’s books, the Infertility
Network from Canada, and the Donor Sibling Registry (see
Figures 2 and 3). All of these resources have Internet connections
for those in the decision-making process and families
who are parenting children, and also include messages
from those who came to a family by donor conception. It
is important to learn from those who have come before us
so parents can become effective advocates for their children.
     In adoption, it is positive for families to announce their
decision to their family and friends to gain their support.
Because a donor conception includes a pregnancy in the
family, the question of whether to go public is more difficult.
While families deserve some privacy regarding personal
decisions, it is well known from family systems theory
that secrets cause problems. From my clinical experience, it
is generally best that couples who are successful with a
donor conception share with family and friends. It benefits
the family to celebrate the unique arrival of this child and
to share in the celebration because this will be a very important
part in the child’s story.

Figure 2.
Readings

Young Children (Ages 3 to 10)
How I Began: The Story of Donor Insemination, by N.S.W.
Infertility Social Workers Group, J. Paul, (Ed.), 1988, Port
Melbourne, Australia: The Fertility Society of Australia.

Let Me Explain: A Story About Donor Insemination, by J.
Schnitter, 1995, Indianapolis, IN: Perspectives Press.

Mommy, Did I Grow in Your Tummy? Where Some Babies
Come From, by E. Gordon, 1992, California: E.M.
Greenberg Press, Inc.

My Story/Our Story, by Donor Conception Network, 2002,
London: Donor Conception Network.

Phoebe’s Family: A Story about Egg Donation, by L. Stamm,
2010, Niskayuna, NY: Graphite Press.

Sometimes It Takes 3 to Make a Baby: Explaining Egg
Donation to Young Children, by K. Bourne, 2002,
Melbourne, Australia: Melbourne IVF.

The Family Book, by T. Parr, 2003, New York: Little, Brown &
Co.

Before You Were Born, Our Wish for a Baby, by J. Grimes,
2004, Webster, IA: X, Y, and Me.
 
Older Children (12 and Older)

Behind Closed Doors: Moving Beyond Secrecy and Shame,
by M. Marrissette, 2006, New York: Be-Mondo Publishing
Inc.

Who Am I? Experiences of Donor Conception, by A.
McWhinnie, 2006, Warwickshire, UK: Idreos Education
Trust.
 
Nurses and Parents

Building a Family with the Assistance of Donor Insemination,
by K. Daniels, 2004, Wellington, New Zealand: Dunmore
Press.

Choosing to be Open about Donor Conception: Experiences
of Parents, by S. Pettle and J. Burns, 2002, London: Donor Conception Network.

Experience of Donor Conception: Parents, Offspring &
Donors through the Years, by C. Lorbach, 2003, London:
Jessica Kingsley Publishers.

Families Following Assisted Conception: What Do We Tell our
Child? by A. McWhinnie, 1996, Dundee, UK: University
of Dundee.

Telling and Talking About Donor Conception: A Guide for
Parents, by Donor Conception Network, 2006. London:
Donor Conception Network.

Third Party Assisted Conception Across Cultures: Social,
Legal & Ethical Perspectives, by E. Blyth and R. Landau,
2003, London: Jessica Kingsley Publishers.

Truth & the Child 10 Years On: Information Exchange in
Donor Assisted Conception, edited by E. Blyth, M.
Crawshaw, and J. Speirs, 1998, Birmingham, UK: British
Association of Social Workers.

Lethal Secrets, The Psychology of Donor Insemination
Problems and Solutions, by A. Baron and R. Pannor,
2008, Las Vegas, NV: Triadoption Publications .

Mommies, Daddies, Donors, Surrogates: Answering Tough
Questions and Building Strong Families, by D. Ehrensaft,
2005, New York: Guilford Press.

Note: Many of these publications are available through the
Infertility Network (www.InfertilityNetwork.org).


Figure 3.
Web Sites of Interest


The Donor Sibling Registry
www.donorsiblingregistry.com

Infertility Network
www.InfertilityNetwork.org

Embryo Adoption Awareness Center
www.embryoadoption.org

Adoptive Families (magazine)
www.adoptivefamilies.com

American Society for Reproductive Medicine
www.asrm.org

Legal Issues

Legal issues with donor conception are evolving. Many
states have legislation regarding sperm donor insemination,
few states have legislation regarding egg donation,
and only one state has legislation regarding embryo placement.
In the Kansas City area, both Kansas and Missouri
have legislation for sperm donation. There is no legislation
for egg donation or embryo placement. In my practice, we
recommend a stepparent adoption in egg donation and a
full adoption for embryo placement with an adoption
decree. Recognizing what legal liabilities are present for a
child born by donor conception in the state of residency
provides for the child’s security.
 
The Child’s Story

Beginning the Story
The basic need of a child brought to any family is a positive
attitude about his or her conception, birth, and family.
Accepting the child as an individual with a unique,
genetic history is a crucial factor for donor conceptions.
The parents’ decision to bring a child into their family by
donor represents the first step for creating a positive story.
As in traditional adoption, it is the parents’ job to tell all
they know regarding their donor conception to help the
child understand. There is an attachment process during
the child’s growing years, which is enhanced by honest stories
about how the child came to be. We want a child/adult
to say they do not remember being told because they
always knew how they came into the family.

Infancy
During the child’s infancy is a time for parents to practice
talking to their child with positive language and feelings.
“We so wanted to be parents. We were meant to be
your parents. We are so happy that we got help. Many people
assisted us in your coming to our family, especially our
donor.” Tone of voice communicates pride, love, and celebration,
explaining, “We have so much to tell you and we
are so excited for you to understand how you came into our
family.” Continue the positive language and talk basically
throughout the child’s growing years.

Early Childhood
Some details can be helpful in the understanding process
for the child in early childhood. Children in this stage are
more aware of the world around them and basically understand
the concept of “family.” By this age, children will be
able to tell you who their family members are and how they
are related to each other. They do this by family experiences
and being exposed to different families.
This is a great time to start reading storybooks, and
many are available. The Web site www.XYandMe.com contains
a series of 16 books that begin and end the same, with
not being able to have a biological child, to the joy of having
a child. The middle section describes the child’s particular
reproduction method for coming to the family.
It is also a good idea to put a beginning book together of
pictures of the child coming home. These pictures should
include parents wanting a child, waiting for a positive pregnancy
test, the clinic where the parents received assistance
or picture of the sperm bank and/or egg facility, the doctor’s
office, pictures of the donor and/or genetic family, and pictures
throughout the pregnancy and birth. This book will
start the child from his or her beginning, which includes
the parents’ decision, individuals from whom they received
assistance, and the helper/donor who gave his or her genetics
for the child’s life. For a known donor situation, actual
pictures of the family member, friend, or extended family
can also be provided in the book. The message is clear, that
“we wanted to have children in our family, we worked really
hard for our children to arrive, and we accepted and celebrated
the assistance of many people.”
     This is also a time to look for opportunities to point
things out to children as they learn about the world around
them. For example, “This is a fire station, where firemen
help people when they are in an emergency.” “This is
where we went when we needed help for you to come into
our family.” “This is the hospital where you were born.”
Showing the child these places provides images and concrete
facts along the way. This is also an excellent time to
be talking to the child about the many ways that children
come into a family. Todd Parr (2003) has authored many
books about families and the importance of the love they
share with each other.

Middle Childhood
During the middle years, as in adoptions, children have
many questions. These can occur when driving the car, seeing
a pregnant woman, or standing in line at a grocery
store. Parents are wise to “go with the flow” in terms of
these questions. Parents do well to keep the conversations
active in bringing up the subject from time to time. The
healthy message is that this is a comfortable subject to talk
about, and it is okay to ask questions. Girls tend to ask questions
earlier than boys. As children move into the questions
of how babies are made, more factual information can be
shared. Generally during this time, the “ah-ha” moments
will occur, and children will figure out what “donor” actually
means and then understand this genetic connection to
another.
Sex education received from parents and schools is now
starting to make more sense: They have inherited genes
from the donor and may now begin to question who their
‘real” parent(s) are. The questions “What is real?” and
“Who is real?” come into their thoughts. The realization of
who they are and who their identity is to become is not a
shock because of all the early telling. However, there is
some sadness when children actually understand that one
or both of their parents is not genetically connected to
them.
During this time, the child will ask lots of questions, and
the parents will provide them with information. It is best to
share most of this information before the adolescent years.
In this way, children can put the puzzle pieces together as
they work on identify formation. In our experience, girls
are more likely to ask lots of questions; boys tend not to
want to be different and may not display curiosity. All
extremes are possible from not wanting to talk about it to
talking about it frequently.
The best parental stance is to keep the communication
lines open and answer questions with as much factual
information as possible. If the child asks a question about
the donor, and the parent does not have the information,
it is best to have empathy for the child and say, “I wish I
could answer that question. If I were you, I would want to
know, too.” In an open, identified donor or a known donor
situation, it may be helpful to write the questions down so
the value of the child’s curiosity is validated. The parent can
assure the children these questions can be asked of the
donor.

Adolescence
As children move into their teenage years, they will
learn about science, reproduction, and deoxyribonucleic
acid (DNA) in school. For some children, this will simply be
academic information. However, donor children will identify
these scientific concepts with themselves. In teenage
years, everything is fair game for challenges and questions.
Most adults remember when, as adolescents, they thought,
“Parents don’t really know anything. I am so different from
them.” The psychological task in adolescent years, as discussed
by Erikson (1968), is to individuate, to become a person
with individualized needs, tasks, and freedoms. Teens
want to find out how they are similar and different from
their parents and how they became a unique individual.
Donor-conceived children also have to figure out how they
are similar and different from the genetic donor. These
questions will often challenge the non-genetic parents’
authority, which may produce anxiety for parents. The adolescent
may say things like “You are not my real parents.”
It is best for parents to understand the teenager’s quest for
identity without becoming defensive. Parents need to continue
to distinguish between the facts of the teen’s conception
from the normal responsibilities of parenting.
A teenager who now chooses to share information with
his or her peers may cause concern for parents because not
everyone will understand (or approve of) how the child
came to their family. This is a very fine detail because parents
want to ensure their teen has pride in him or herself.
Some parents might have chosen to maintain more privacy
about the methods used for conception. The child, however,
is really in charge of who is told, and there may be some
surprises along the way.

Summary

Parents who use donor gametes should feel firm and
entitled to say they are this child’s parents. Health care
providers (doctors, nurses, and social workers) must help
these parents. Their decision to bring a child into the world
creates continuous consequences for the whole family. The
parents’ responsibility is to attach, parent, and educate, and
the child’s responsibility is to ask questions to form an
identity and find ways to feel secure about the individual
he or she is becoming. Participating as the child’s advocate
presents many joys and celebrations, as well as many challenges.
Pediatric nurses can help families resolve infertility
issues and obtain education about donor conception. This
advocacy provides the freedom for parents to be proud of
their decision, attach to the process, and rejoice for the
child who comes to their family. This is a true blessing for
everyone.





Kris A. Probasco. LSCSW, LCSW is Executive Director,
Adoption & Fertility Resources, A Division of Clinical Counseling Associates, Inc.,
Liberty, MO, and Overland Park, KS.
Author’s Note: I would like to dedicate this article to my mentors,
Annette Baron (author of The Adoption Triangle and Lethal Secrets)
and Sharon Kaplan Rozia (author of The Open Adoption Experience).
Annette and Sharon have taught me to speak the truth and to encourage
parents to speak the truth to their children for the benefit of their
children.

References
Bouchard, T.J., Jr., Lykken, D.T., McGue, M., Segal, N.L., & Tellegan, A.
(1990). Sources of human psycological differences: The
Minnesota Study of Twins Reared Apart. Science 250(4978), 223-
228.
Buster, J.E., Bustillo, M., Thorneycroft, I.H., Simon, J.A., Boyers, S.P.,
Marshall, J.R., ... Louw, J.A. (1983) Non-surgical transfer of an invivo
fertilized donated ovum to an infertility patient. The Lancet,
1(8328), 816-817.
“Embryo adoption becoming the rage.” (2009, April 19). The
Washington Times. Retrieved from http://www.washingtontimes.
com/news/2009/apr/19/embryo-adoption-becoming-rage/
Erikson, E. (1968). The stages of psychosocial development. New York:
Norton.
Parr, T. (2003). The family book. New York: Little, Brown & Co.
Snowden, R., Mitchell, G.D., & Snowden, E.M. (1983). Artificial reproduction:
A social investigation. London: George Allen & Unwin.