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

Neighbors Magazine

6 | Neighbors Magazine • Feb 19, 2015 • Volume 3, Issue 4 Neighbors Magazine • Feb 19, 2015 • Volume 3, Issue 4 | 7 Inc
23975 Highway 149 • Sigourney
641-622-2159

X, Y and Me

In today’s world, many children are
conceived through
assisted reproductive
techniques. This raises the
issue of whether to disclose this
information to family, friends, and
most importantly, the child. There is
much controversy as to whether it
is a child’s right to know his or her
genetic heritage. This delicate issue
of disclosure needs to be decided by
parents; especially as science and
medicine continue to delve into the
genetic inheritance of disease.

It can be very difficult for parents to
know how and when to disclose this
information. They may delay telling
their child because they don’t know
how to broach the subject, the time
never seems right, or they may be
afraid of their child’s reaction. Some
literature shows there may be a
real advantage to giving information
regarding conception to a child
at a young age. This prevents the
emotional upset that could occur if
a child accidentally discovers or is
told later in life that he or she was
conceived in an alternative way. It
is especially devastating to find out
as an adult that one or both of your
parents are not genetically related to
you. Adults told later in life often feel
hurt, angry, and betrayed.

Janice Grimes, the author has been a Registered
Nurse for over thirty years after
having obtained her nursing degree
in Baltimore, Maryland. The majority
of her nursing career was spent
in the Emergency Department and
Recovery Room.

In 2000, Janice and her husband,
Todd moved to Webster, Iowa to fulfill
Todd’s life long dream of owning
farmland. They became interested
in our area after a vacation to Iowa
to see a John Deere tractor built
(Todd was an avid collector of John
Deere memorabilia). The countryside
reminded them of Maryland. They
had got in touch with Alan Grimm, a
North English  realtor, who kept in touch after
they returned home to Maryland.

Janice worked for the ER department
in Ottumwa for two years before
moving to the U of I hospital’s in
vitro fertilization unit (IVF) where she
worked for seven years. Not only did
Janice work in IVF, she was in fact an
IVF patient herself.

As her knowledge of IVF grew, Janice
became interested in the moral
and ethical issues of disclosure. The
number of children conceived by alternative
methods is staggering and
continues to increase as women put
pregnancy “on hold” to pursue their
careers and as same sex couples
become more open and wish to have
families. The most current statistics
from the Centers for Disease Control
and Prevention show that 40,687
IVF children were born in the United
States as the result of IVF cycles carried
out in 2001.

Her interest was peaked during a
somewhat awkward situation. An
anonymous donor had returned
one day for a repeat donor cycle. A
recipient who had successfully conceived
thanks to this donor’s egg donations
was also there. The recipient
mom had come to show her nurses
her twins. Both women passed each
other in the waiting room. Neither
one knew the other. The nurses held
their breath. They knew that the
biological mother had just walked by
her “children” and the recipient had
just walked by her donor. The nurses
later talked about the anonymity and
secret nature that surrounded the
birth of these babies.

As a result of this encounter, Janice
developed a series of children’s
books as a means to assist parents
wishing to disclose. She researched
the issue of disclosure, specifically
to see if couples were telling their
children about their alternative conception.
Although professionals tell
the parents it is best to disclose, very
few tools are available to help them
with this issue. When she undertook
this project, there were only 5
books in the entire world written for
children (only one in the U.S.).

The “Before You Were Born” books
were created to help as many parents
as possible. Therefore, the illustrations
are the same in every
book and are not related to the
text. A sample is available on Janice’s
website at www.xyandme.
com The pictures show a typical
day in the life of a child interacting
with their parent. It was her intent
to make the “parent” and “child”
bears as gender and ethnically
ambiguous as possible. She also
wrote the books in such a way that
whichever parent is reading the
story is the “bear parent” speaking.

A few of the books are not currently
available in paperback, but can
be downloaded electronically at
www.epubbud.com.

Janice can be reached at janice@
xyandme.com.

Telling Your Child by the DC Network

The Donor Conception Network in the UK is an excellent resource.  Please visit their site for a ton of information on donor disclosure.

http://www.dcnetwork.org/telling-your-child

Telling Your Child

Although we encourage parents to start telling children about donor conception when they are under five, we know that there are many families with older children - sometimes even adults themselves - who have not 'told' yet.  Our Telling and Talking booklets cover all age groups, but we are always ready and happy to individually support families in telling older offspring.  We have particular experience of supporting parents of donor conceived adults.  If this is your situation do contact us in the first instance at enquiries@dcnetwork.org

Reasons to tell

Telling children about their origins by donor conception –
  • Puts honesty at the heart of family relationships
  • Is respectful of donor conceived children/people as individuals in their own right
  • Allows donor conceived people to make choices about their lives
  • Allows donor conceived children to learn about aspects of their history, integrate the knowledge as they grow up and accept their story without shock or distress
  • Means that significant differences between a child and parent (in looks, talents etc.) can be easily explained.  Some DC adults have thought they must be adopted or the result of an affair by their mother.
  • Means that a true medical history (or lack of it) can be given to doctors, making diagnosis and treatment of medical conditions more accurate.  It also removes anxiety about the inheritance of disorders from the non-genetic parent
  • Does not mean that children will reject their non-genetic parent.

Are there any circumstances where ‘not telling’ is the right thing to do?

DC Network is committed to the principle of openness for all children.  However, if a child has severe developmental delay or learning difficulties parents will need to take into account developmental age and the needs of their particular child when deciding when and how to tell.  In communities where donor conception is disapproved of parents first of all face very difficult questions about whether donor conception is right for them and if they then go ahead, the dilemmas of sharing information with their child and others.  If a child is unable to be proud of who they are then not 'telling' may be the only reasonable option. 
Parents need to be very honest with themselves.  Concerns that a child may be upset or confused by being ‘told’ can cover anxieties and fears that properly belong to the parents and are not to do with the child at all.

Is there a ‘right’ age to start telling?

The goal of early ‘telling’ is that a child should grow up ‘never knowing a time when they didn’t know’ about their origins by donor conception.  In practical terms this means starting the process of sharing information with your child from under the age of five.  Some people like to start talking with their baby – chatting about the donor while changing a nappy is popular.  Others like to settle down and enjoy ordinary family life first and then introduce one of the Our Story books from around 18 months or two years.  A few families wait until their child starts asking about where babies come from at around 4.
What is worth taking into account in deciding when to begin the story is that the earlier you start the easier it is likely to be for you both.  It gives you a chance to practice the language at a time when your baby is not really understanding the words but simply enjoying being talked to.  It also means that once you have started you always have something to build on.
If for some reason it has not been possible to start early, then ‘telling’ is possible at any age.  It simply takes more preparation and has to be undertaken as an event rather than a process. 
What can help in knowing when to tell (and how to do it at any age) –
  • The Telling and Talking booklets, 0-7, 8-11, 12-16 and 17+ are designed to support and guide parents in starting and continuing to be open at any age.
  • The Our Story books for children conceived by sperm donation, egg donation and also double or embryo donation are wonderful starting points for sharing information with children
  • Join DCN to talk with other parents about when they ‘told’ their children
  • Come on a Telling and Talking workshop
  • Read the recommended books in the DCN Library for stories of when parents around the world have shared information with their children
If for some reason you have not told your child and s/he has now reached late teenage years or is into adulthood you may find yourselves wanting some support before going ahead...or want to talk about the pros and cons of doing so.  DCN recognises this as a particularly challenging situation and we are happy to offer you support in the form of a face to face consultation, plus all our usual services.  We may also be able to put you in touch with other parents who told their children in adulthood.

What language should we use?

Parents often worry that starting to share information with a very young child means that they will have to start talking about sex and reproduction in a way that is inappropriate for such a small person.  Using the ‘building block’ approach where information is built up in very small chunks over time means that language can remain simple and sex and reproduction does not need to be addressed until a child is ready to take this on board.
What can help with the language and timing of telling –
  • The Telling and Talking booklet, 0-7 gives examples of language you can use with any baby or child in this age group
  • The American Fertility Association has produced a very good booklet on openness and ‘telling’ for parents of children conceived by egg donation.
  • The Our Story books for children conceived by sperm donation, egg donation and also double or embryo donation contain language that parents often find valuable to use.

What sort of reaction should we expect?

What matters most to young children is that they have a loving and secure relationship with their parents.  This is what helps them feel good about themselves.  They do not care about genetic connections so when you talk with them about ‘Mummy not having enough eggs so she needed some help from a kind lady’ or ‘Daddy’s sperm not being able to swim fast enough to reach Mummy’s egg’, your child’s response may be indifference, to ask if they can have sausages for tea or to ask what a sperm looks like (most will think they know an egg when they see one).   Each of these and anything else is a completely normal response.
If you are ‘telling’ for the first time when your child is over seven, then it is likely to start with a ‘sitting down and telling event’ rather than a process over the course of several years, although you can prepare the ground by talking about how all families are different and sometimes parents need some help to make a baby.
Children of eight or over have much greater understanding than those under this age.  How they receive the news about being donor conceived is likely to depend as much on how you feel about it and go about telling them as on their own personality and general way of dealing with things.  If they understand immediately – and not all children do make this link at first - that the information means that they do not have a ‘blood’ connection to one or other parent (or both) then there may be an element of shock.  Some children are interested in the science involved in donor conception and particularly IVF.  The older they are the more likely it is that they will be angry at not having been told this information earlier.  Some children are sad for a while that they are not connected by genes and blood to a much loved parent.  This can also happen in middle childhood as part of the process of integration in children who have been told from a very young age.
What can help with understanding reactions at different ages –
  • The Telling and Talking booklets, 0-7, 8-11, 12-16 and 17+ are designed to support and guide parents in starting and continuing to be open at any age and to give insight into different reactions at these stages of development
What happens if and when our child starts sharing what we are telling them with others?
Young children rarely talk about donor conception to others, not because it worries them, but because it is of no interest at all.  Even when children are older they often find that other children change the subject because they know nothing about it.  This can be quite frustrating for a donor conceived child who thinks DC is cool and wants to talk about it!
Older children who are comfortable with their origins are well able to correct others when they make wrong assumptions – that a child is adopted, doesn’t have a mother/father or is an orphan.  They may well mention in biology or personal and social education classes that they are donor conceived and this is mostly received simply as factual information.
Confident children whose parents have been open with them from the beginning are well able to combat the rare attempts at teasing or bullying based on their DC origins.
Sharing information with primary school teachers can be valuable so that they can support and back-up a child who talks about their beginnings in class.  At secondary school stage the information is the childs’ to share, or not, as they choose.
What can help with supporting children telling others –
  • The Telling and Talking booklets, 0-7, 8-11, 12-16 and 17+ are designed to support and guide parents in starting and continuing to be open at any age and give examples of situations where children have told others and handled their responses.

How do you Tell when you have children with different beginnings?

In DC Network we have many families where not all the children are donor conceived.  Sometimes there are adopted children or step-children from a partner’s previous relationship.  An increasing number of families have one child conceived without help at all or using IVF with the couple’s own eggs and sperm, and then need egg donation to have second or subsequent child.
Difference in itself can be perceived by parents as a problem, but children are only likely to find it so if parents are anxious, stress differences, and treat children unequally.  Of course treating children equally does not necessarily mean treating them the same, as each child should be responded to according to their different needs.
What can help in families where children have different beginnings?
  • Read the booklet Mixed Blessings: Building a family with and without donor help.  This was written especially for you.
  • There are sections in Telling and Talking 0 – 7 and 8 – 11 about sharing information when there is difference in the family. 

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.