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The American Fertility Association Blog
On Surviving Infertility…..
October 24, 2007 - Wednesday
Posted by Pamela
Infertility is a disease that affects people from all races, professions and economic levels. We struggle to do what others think “comes naturally.” We desire to be a part of a community which often centers on family and children. We too, would like told hold our infant among adoring relatives, push our strollers down the avenue, and see simple wonders of the world through the eyes of our child. We want what most people in America and indeed, around the world value the most in their lives...a family.
Often, we feel set apart of the daily rituals of our community. Something as commonplace as a family gathering, a baby’s Bris or Christening or even how we choose to spend a Saturday afternoon, can be yet another line of division between ourselves and our fertile friends and family. I would like to take a minute, acknowledge those of you who are reading this...and your personal courage..
But it is only in recent days that infertility has come out of the closet. For the television shows and print media, one would think that infertility is a very public issue these days. But today, the media, if not us, have come out of the closet. We only have to turn on the television or open a magazine to see the personal dramas of infertility played out through the eyes of the tabloid media. It might be encouraging for you to know, despite the coverage, that on average, the infertile as a group spend less than three years in treatment and most of us leave treatment with biological connected children.
Much has been said about the patient perspective of the perfect infertility physician. In doing my reading on the topic, I read a wonderful joke that has been used to describe the doctor/patient relationship. Angels in heaven were all lined up in the cafeteria waiting to be served dinner. Suddenly, a conspicuous angel appeared wearing a white lab coat and a stethoscrope, who started pushing his way to the front of the line. A new angel turned to an older one and asked, “Why in heaven would an angel act like that?” The senior angel shrugged his shoulders and responded, “Oh, that’s just G-d. Sometimes He likes to play doctor!”
What this joke plays to is the public perception of the physician as G-d. But we often do not discuss the qualities of the perfect patient, except of course the advantages of youth and having infertility as part of your health care package! Using this example of the heavens, an image can also be made of the patient as an angel, who allows herself to be pushed aside and quietly suffers. Interestingly, the word patient comes from the Latin word, “pati”, meaning “to suffer.” In fact, the adjective patient is defined as “bearing pains and trials calmly or without complaint.” The implication is that a patient must suffer silently like an angel.
I was never a silent angel. I was not a perfect patient either. But I gradually learned to be an effective patient. This transformation became about as I gradually figured out that I did not have to be a victim of infertility. I could be a survivor.
I think that the first step in surviving, is that we as patients in infertility have an especially difficult time dismissing the image of “The Doctor as G-d”. After all, especially in the treatment of infertility, the doctor can be seen as the giver of life. And let’s face it, we hang on every word. But to be an effective patient, we must learn to see the doctor that cares for us as a person with special skills instead of a G-d like figure. Only then, when we feel less intimidated, can we communicate more naturally with our doctor.
Effective patients approach infertility as a couple’s problem (when there is a partner!). Even when only one half of the couple has been identified as having the medical condition, it does not mean that both halves are not affected by the disease of infertility. The infertility work up, evaluation, and treatment is handled so much more effectively when both members of the couple participate in the office visits and have an understanding of the tests and procedures they have to go through. A couple who approaches infertility as a unit and shares the involvement in their treatment, is better able to support each other and make better decisions about their treatment and options. Remember when you try to divide an elephant in half, you have a mess, not two small elephants. In order for us to get through this we have to communicate and support each other with this elephant and not go off in different directions.
To be a survivor, we have to learn to ask questions about their treatment. Ask your physician direct questions about treatment shortcomings, alternative tests and therapies. For example, Is age a factor in this success rate? Will it hurt? How much will it hurt? What are the complications? What are the benefits of this treatment over others? It can be helpful to come prepared with your questions written down. To be an effective patient, you need to fully understand your tests and treatments in order to follow directions properly.
Survivors tell the doctor when he or she is failing them. This is probably the hardest thing for patients to do. I think we all have this fantasy, that if our “doctor really, really likes us” and we are “very good patients”, our doctor will try harder to get us pregnant. Communicating to a physician when we are unhappy about how we are being treated or the way our treatment is going can be very intimidating. It may one day happen, while you are in treatment, that you get upset about how certain procedures were handled or how you were handled while going through the procedure.
The emotional pain from such incidences can dig deeply when you are chronically in treatment and feel like so much depends on each cycle. These feelings can ultimately affect the doctor/patient relationship. But your doctor cannot be held responsible without first being made aware of how you feel and then being allowed the opportunity to respond. The doctor/patient relationship in infertility treatment is an intense one. And as in any relationship, both the positive and negative issues that occur need to be discussed and not avoided. Sometimes when we have been in treatment with a physician for an extended period of time without a pregnancy everybody gets frustrated, including the doctor! We can feel as if our doctor does not see us anymore. At times like these it can really help to schedule a sit down consultation when you can be sure your doctor has reviewed your treatment and you have her undivided attention.
Survivors understands that they have to be their own best advocate and seek education on both the medical and emotional aspects of infertility. The fact that you are reading this blog… tells me that you are a survivor. The professionals that take care of us, will probably tell you that infertility patients are probably most medically versed of all patients. However, we may overlook information about the feelings brought on by our infertility. A good way to begin, is to take advantage of all The AFA has to offer… check out our support groups or try reading about the emotional aspects of infertility. Infertility is one of the most stressful life crises you are likely to ever experience.
Infertility can shake the core of your being. But try to remember that while infertility is stressful, the feelings of stress are normal and expected, but not permanent. I promise you, you will not feel the way you feel today, forever. However, while we are in treatment and daily dealing with the pain of infertility, we need to find ways to cope and come out of this experience a whole person.
Again, guidance and understanding can be found through The AFA. Check out the new message boards. Participate in a weekly chat...attend a support group. Trying yoga, meditation, and exercise can also be helpful. I know it’s hard, and I couldn’t always do it, but try not to give up your life while you are going through this. Try not to let the stress of infertility isolate you. If you can find an infertility buddy through your program, or The AFA, this can be a life saver. Who else will listen to how many follicles you produced and the condition of uterine lining for hours on end?
The patient who is a survivor who have learned to take an active role in the medical team, interpret success rates, is an educated consumer, gets emotional support in order to gain insight and encouragement for our personal choices, and sometimes, the effective patient has to know when it is time to stop being a patient.
Take one step towards leaving being a victim behind. Try being an active participant in the treatment process rather than a passive recipient of medical intervention. Make contingency plans with your doctor and spouse, what will we do if this treatment option or adoption plan does not work out. Remember, patients who are able to see the physician as a person, not a deity, don’t have to act like angels sitting silently in the wings.
It is has been said that the measure of success is how we handle the journey rather than its actual outcome. I know what you want. I wish for all of you the same thing you are wishing for yourselves - a healthy baby.
But try to not let the achievement of this goal be the only measure of your success. While you are riding the infertility roller coaster, try taking control of the moment and feel the success in just that. .
Through this experience, that you never wanted; through the tears and frustration, you and your partner will grow in a positive way. Maybe in a way you can’t even see yet. And your love and strength for each other will tighten like a vine on a tree.
I believe in your strength and your courage. I have sat where you are sitting today. I have felt like the floor was opening beneath my feet, and my biggest accomplishment for the moment was that I was breathing. You will come through this. And you will write your own individual “happily ever after”. I hold out my hand to you and wish you a short journey.
Until Tomorrow,
Pamela
Categories
Fertility •
Fertility Preservation •
Infertility
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Dream Catcher Child
October 23, 2007 - Tuesday
Posted by Pamela
I never envisioned myself the mother of boys. When I used to imagine my child, I would picture a little dark haired girl. Sometimes, I would see her in glimpses, holding someone else’s hand. She would have a page-boy hair cut and look a little Asian. I had a long time to imagine and long for this imaginary child.
During the height of my infertility, I used to picture this little child, and tell her why I wanted her so much. I told her what a good mother and father she would have, if she would just be born. I shared my dreams with her. I looked in shop windows at little pink things that I might buy for her. She was my child of hope.
I came across a passage in a novel I was reading recently. It struck an unexpected chord in me, and I was reminded of my “infertility child”. Scottish sisters-in-law who lived in the 1700’s are talking late at night. One is a new mother, with her child at her breast. The new mother was explaining to her sister about how she talked to her baby before the child was born.
“You can talk to a babe, you know. You can tell them anything. You can pour out your soul to them without choosing your words or keeping anything back at all. And that’s a comfort to the soul. I have often wondered if that’s why women are so often sad, once the child is born,” she said meditatively, as though thinking aloud. “Ye think of them while ye talk, and you have a knowledge of them as they are inside ye, the way you think they are. And then they’re born and they’re different - not the way you thought of them inside, at all. And ye love them of course, and get to know them the way they are… but still there is the thought of the child ye once talked to in your heart, and that child is gone. So I think it’s the grievin’ for the child unborn that you feel, even as ye hold the born one in your arms.” And she paused and kissed the downy head of her daughter. “Yes, before....it’s all possibility. It might be a son, or a daughter. A plain child, a bonny one. And then it’s born, and all the things it might have been are gone, because now it is. And a daughter is born, and the son that she might have been is dead,” she said quietly. “And the bonny lad at your breast has killed the wee lassie ye thought you carried. And ye weep for what you didn’t know, and that’s gone for good, until you know the child you have, and then at last it’s as though they could never have been other than they are, and you feel naught but joy in them. But until then, you weep easy.”
The child unknown is an issue for many of those struggling with infertility. The child of infertility for you, may be the child you lost through miscarriage or stillbirth. The child you talked to in your heart may be the one you have to say goodbye to before you are able to pursue adoption or third party reproduction. And like me, you might be surprised to find that you did not or might not, give birth to the baby you were talking to for so long.
I sit on my couch, and watch an old family video of my little family when they were younger. I see two beautiful blond haired boys. Not Asian in appearance, but rather Nordic. Tyler the five year old is actually hugging his little brother and shouts “Family Hug Time”. I watch myself in the video, gathering my treasures in my arms.
Treasures that were buried deep and almost lost. I sniff their hair and kiss their eyelids. I can see the look of wonderment on my own much younger face...it is as though I am thanking the heavens for these boys that are are so real and finally here.
I am caught by the thought of that little girl, so different, that child of my infertility dreams. I think of her, as I watch myself in the midst of solid, sturdy arms wrapped tightly around my neck. And I bless her for keeping me company and giving me hope. Her image challenged me to find some inner strength. In my mind’s eye, she asked me to find her. And I did. In two little boys.
Until Tomorrow,
Pamela
Categories
Adoption •
Donor Sperm •
Egg Donation •
Fertility •
Gestational Carrier •
Infertility •
Pregnancy Loss •
Surrogacy
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Who Should Support The Patient Organizations?
October 22, 2007 - Monday
Posted by Pamela
A new conversation that has been happening lately with me...and doctors...and allied health care industry...is who should be financially supporting organizations like The American Fertility Association?
Some doctors and companies feel that all the financial support should come from the patients themselves...and that the professional community should not be expected to support patient groups...and many patients feel that the professional community who benefit financially through the pain and suffering of the patient community should be giving back and supporting them through organizations like The American Fertility Association.
In my view, we all need to support patient groups. Yes...the patients should be trying to support us in every way that they can...perhaps it is not when they are going through the experience...or sometimes it is...some people may feel that they have nothing more to give while they are in treatment...perhaps it is when closure comes..and for others it may feel empowering to support us while they are working on building their families...but we do need the financial and intellectual support of our patient community.
But we also need the support of our physician community and the allied health fields. Please take a look at the list of doctors that have stepped up....Our Physician Leadership Circle...You can find it on the home page...is one of these doctors your doctor? If it is, please thank them for supporting us....because by supporting The AFA, they are supporting you. And if your doctor is not on the list...why don’t you ask them to step up and join....tell them that you are also going to write a check...or volunteer…
So who should be supporting the patient organizations? The answer is....all of us. Because without the support of the entire community...we will not be here for all of the people that depend on us.
Until Tomorrow,
Pamela
Categories
Fertility •
Infertility
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Donor Registries…Has The Time Come?
October 21, 2007 - Sunday
Posted by Pamela
So...a big hot topic in the fertility community is whether or not there finally needs to be a donor registry....and the focus seems to be more on a donor sperm registry than a donor egg registry.
And right now there seems to be more questions than answers when it comes to establishing a donor sperm registry in the United States.
Some of the questions....
What is the registry meant to do? Supply medical information to the children and families of donor children....or social information about siblings and link the donors with the children when they come of age? Or both?
What about privacy issues of the donors...and the children?
Who is going to keep this information? Who is going to fund this?
Will the registry be voluntary or compulsory?
One thing is clear...at least to me...we need a better way of tracking donors....no sperm donor should have twenty five offspring...and I personally think that sperm donors should have exactly the same psychological screening as egg donors. And right now, in most sperm banks in this country they don’t. Why the distinction? A donor is a donor. Egg or sperm...wouldn’t you want your donor to have the same screening?
I would.
Part of the problem is that users of donor sperm...both the recipients and the doctors do not have to report the pregnancies...and you don’t even have to have a doctor’s note to order sperm at most sperm banks. You can simply order the sperm and self inseminate and then you never have to report to anyone whether a pregnancy occurs or not. With the current system in place...how is anyone supposed to keep track of how many offspring a donor produces? And what about psychological counseling about using donor sperm for the recipients? Is that happening in ob/gyn offices where much of the donor sperm is being used? Not very likely.
With egg donation, couples are counseled in fertility clinics about using donor gametes...who is counseling the recipients of donor sperm?
I think that we all need to care about this issue...and I would love to hear what you think! So post a comment...and let me know....lets start a conversation about this...right here....
In my email today came this...from the Infertility Network....
“Tonight in Canada a program will be airing called ”BRAVE NEW FAMILY”.
Science journalist Alison Motluk explores the creation of new types of families as a result of donor insemination.
You might not be able to tune in..but you can get it on line...but here is the programing information...Mon, Oct 22, 2007. 9:05-10:00pm.
In this program, Natalie Fokes, a single Vancouver woman, discusses how she chose her donor and why she longs to be a mother. We hear from a group of women who are spread out across the US but who all share the same donor. They tell us what a comfort it has been to connect with their children’s half-siblings and their moms, and to know their children are not alone in the world.
Danielle Pagano, from New York, describes finding and bonding with several half-siblings and her donor dad. A former sperm donor, Kirk Maxey, talks about meeting two of his donor-conceived offspring and explains the complications to donors’ families of doing so. Laura Shanner and others discuss anonymity.
‘Ideas’, CBC Radio One Heard throughout Canada and the northern United States on the 402 radio stations and transmitters of the Canadian Broadcasting Corporation, Canada’s public broadcaster. Listen online: http://www.cbc.ca/radio (Click on 1 of 6 timezones. This is handy if you can’t listen to the program in your local time.) Also, these programs may also be available at a later date via podcast. Check at http://www.cbc.ca/ideas/podcast.html
‘Ideas’ is CBC Radio’s premier program of contemporary thought, with an audience of approximately 400,000 listeners. It explores social issues, culture and the arts, geopolitics, history, biography, science and technology, and the humanities. Most of the programs are documentaries in which thoughts are gathered, contexts explored, and connections made.”
So if you are interested...see if you can tune in....and lets be a part of this conversation. I am looking forward to reading your comments…
Until Tomorrow,
Pamela
Categories
Fertility •
Sperm Donation
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A Change of Heart….
October 18, 2007 - Thursday
Posted by Pamela
The AFA has been supporting gay and lesbian family building for three years now. It is our belief that love and family knows no sexual orientation....and we have supported same sex couples to have the same rights as straight couples when it comes to marriage. They deserve the same protections...and so do their kids.
What is so interesting, is that some people never really get it...until they are touched directly by an issue.
This was recently the case when San Diego mayor Jerry Sanders made a very moving public statement in favor of gay marriage—a position that was quite a turn around for him...You see, his daughter Lisa recently came out that she is gay.
So...what once felt so far away and detached for Jerry Sanders...now came home. Of course he wanted his beloved daughter and her children to have the same rights as everybody else...of course.
It was quite touching to watch this conservative heterosexual male public figure be so emotional in support of gay people...and the rights that they should enjoy. In the end...once again....it was about family. Take a minute...click on the link...and listen to Jerry Sanders finding his heart.
http://www.youtube.com/watch?v=SnTwrnKb61Q
Have a beautiful weekend....
See you Monday!
Pamela
Categories
Fertility •
Gay and Lesbian Family Building
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