Infertility: Breaking the Silence
You Are Not Alone on your journey to parenthood
Published 2015. Shady Grove Fertility. To share your story, please visit ShadyGroveFertility.com/share-your-story For more information about infertility treatment or to schedule an appointment, please call 1.888.761.1967. SHADY GROVE FERTILITY
9600 Blackweel Road, 5th Floor • Rockville, MD 20850 1.888.761.1967• ShadyGroveFertility.com
Dear Friend, From your extended family here at Shady Grove Fertility, we offer you this book to support you on your journey to parenthood. This journey may take many paths, but know that you are not alone. Infertility affects 1 in 8 couples. It involves many emotions, some up and some down. We believe that part of the healing process is to connect with other women and men who are experiencing similar feelings. This human connection is extraordinarily powerful and can provide a well of support to draw from. It is our hope that through a connected community of support comes the ability to move forward and persevere. Break the silence, raise awareness, and remove the isolation of infertility. There is strength in numbers and you are not alone. Thank you to all of the incredibly courageous women who chose to share their journeys with us—and thank you to the partners, friends, and family who provided support along the way. Respectfully yours,
Shady Grove Fertility
Welcome
#YouAreNotAlone | 1
What does isolation look like to you? Isolation for me is not knowing what to do or where to go when we first started the process… Being able to have a relationship with the doctor has helped us feel more confident about everything. I can't imagine going into the process blind, which most people do. - Torey
We felt very isolated throughout our fertility journey because all of our friends and family seemed to get pregnant so quickly and easily. I started feeling depressed because I was invited to baby shower after baby shower in the midst of our treatments. It was a very tough time because we kept our treatments secret from everyone. - Devin personally it
Feeling Isolated
I think there is shame in having something go wrong For me in something (supposedly!) seemed like there was so easy as trying to have a Isolation is a sad, depressing place. so much shame in the baby. It’s so intimate. And To feel so alone. Everyone questions infertility world. You entering the IVF process over and over as to when "it's" going is also not something that walk into the waiting to happen. A question you grow to makes for casual watercooler rooms and everyone dread; that makes you hurt so much conversation—it’s so personal keeps their heads down inside. We sometimes find ourselves and invasive at the same hiding from everyone. We dread and you could hear a time. You also want to spare pin drop most days. You family functions and going out with those closer to you the roller friends, choosing instead to sit at coaster, and yet without feel so alone, yet you’re home or lay in bed. - Ashley talking to them, it’s hard surrounded by others to evaluate where you are who are going through Isolation looks like being in a room emotionally. When you miss, full of women (a social at church, the same thing. it’s a huge crash. How to a book club, a group lunch, etc) - Heather evaluate whether to try again? where everyone is swapping stories Sometimes withdrawing of pregnancies and kids and you sit seems easiest, and that’s the root of the isolation—the there and quietly laugh or smile but really you're experience feels too big to process—everyone is trying to dying a little on the inside. - Meredith stay positive, and you are at the center, trying to hold the center, for your partner and everyone else. - Anonymous Isolation looks like a person lost in his/her own Isolation looks like fear, loneliness, and shame. The thing that I try to remember is that I am not alone! There are so many other women and families that have experienced infertility and I am constantly amazed by the strength, determination, and love in their lives. - Lauren
2 | Shady Grove Fertility
thoughts, frustrations, anger, and fears because he/ she feels like they have no one to turn to for help and support. They may look completely normal to everyone on the outside, but there is a huge burden being held inside, hiding behind that smile. - Patrice
Facing infertility without any support can be very isolating. I had fears and negative thoughts of whether or not we would ever be able to have our own children. Facing the constant struggles and barriers to infertility was very frustrating and draining. Having no outlet to share concerns or experiences can make you feel very alone and exacerbate the fears and negative thoughts. You end up thinking there is something wrong with you. You struggle through the constant pressure from friends and relatives when they ask when you will be starting your own family. It can be very frustrating and depressing. - Margie For me, isolation looked like normal life from the outside. I would get up. I would put on my happy face. I would go to work. I would come home, make dinner, catch up on my blogs. But then I would shut down. The summer after my miscarriage, I was invited to seven baby showers. Seven. I felt like every time I turned the corner, another friend was announcing their pregnancy. I would send a gift, but I did not attend any of the baby showers. I couldn't stomach the thought. I stopped going out—not just to baby showers; but wedding showers, bbqs, happy hours, etc. My new best friend was the ignore button on my phone. I looked like a completely sane person from the outside, but inside I was a mess. - Tori
Shady Grove Fertility’s Psychological Support Services Team Caring for your emotional well-being is as important to us as treating your infertility. We understand that your experiences and needs are unique, which is why Shady Grove Fertility has many different support groups to offer you. Find free support groups in your area at: ShadyGroveFertility.com/support-groups The Online Community Online resources—from blogs to forums to social media platforms—have provided fertility patients with the most incredible resource they can have on their journey: the ability to connect with others in the same position. You may feel like you are the only one experiencing infertility, but having access to the online community lets you know you are not alone. At Shady Grove Fertility, our Facebook community is over 18,000 strong and highly active, with patients often becoming friends offline. Educational Events Another valuable place to find support is through education. Knowing can be half the battle, and attending a Shady Grove Fertility seminar or webcast can be a powerful first step on your journey. Free seminars and webcasts occur throughout the Mid-Atlantic region on a monthly basis. Find educational events in your area at: ShadyGroveFertility.com/seminars Informational Videos Shady Grove Fertility also has a YouTube channel with informational videos about fertility treatment. To view this content, go to youtube.com/ShadyGroveFRSC.
#YouAreNotAlone | 3
Feeling Isolated
I have learned that there are many more people who suffer from infertility than I realized. It is challenging to share this struggle with family and friends who've conceived naturally because the general population does not recognize infertility as a disease. When you are vulnerable and seek support from people who just don't understand, and they offer advice that does not help instead of just listening and offering their support and love, that is isolation. - Allison
FINDING SUPPORT
Finding Support
Where did you find support on your fertility journey? The biggest support I received in my infertility journey We found support through online groups and interactions with friends who have walked the path was the SGF Facebook page. When women came before us. Both were invaluable: it’s great to be able together to share their experiences and ask one another to pray for upcoming appointments to talk to people who and procedures, that was extremely really understand what Finding support has been encouraging. Women who overcame you’re going through. such an important part of their infertility were able to provide - Kristen hope for those still struggling in the my journey. The first step I was on Facebook process. I also have very supportive for me was sharing our one day and saw an ad friends and family who didn’t infertility diagnosis and for a job. I responded understand the process, but they were and jumped in full news of our upcoming there to support me through it. - Andrea speed to try and get my treatment with friends and I found an infertility forum that had a attention on something family—it felt so much group that was going through an IVF else and it worked. I better to finally tell people cycle when I was. The forum was a great was starting to feel like in my life what was going outlet to share experiences and fears and myself again and just hear how others were going through the on and to ask for their accepting what was IVF process with you. This wonderful happening. - Torey support. I’m not going to group of women from around the lie, it was scary, but every What worked for me globe became so close that we started single person I have told to manifest a baby in our own private Facebook group and my life: I told everyone has been supportive and I to this day constantly keep in touch. their names; I wrote am so happy that I shared We continue to support those that had their names around with each of them. - Lauren an unsuccessful cycle and are trying the house on things again while we cheer on those that are like a sign in the expecting their little miracle in just a nursery. I bought a few months. Having this group has allowed me to share cute matching newborn twin outfit that I looked at my infertility stories so that others are not alone in this every morning. I had the traditional vision board journey. - Margie with all things baby. I painted a beach mural in the I found support in my partner and in many other patients nursery. Then, when I read the donor profile of the who went through the same journey or even tougher girl that loved to take her kids to the beach... well it times. Being an employee of SGF and being able to see sounded like the right choice for us. - Julie other patients’ journeys helped me a lot. - Afsheen
4 | Shady Grove Fertility
I found support by reading SGF patient stories, talking to my doctor and nurse, and keeping myself busy. I kept busy with exercise because I knew I had the best chances of getting pregnant if I lead a healthy lifestyle. The SGF patient stories were very inspirational. Many couples who shared their stories had situations similar to mine, so their stories gave me hope. - Devin
The most unexpected place I found support was in the blog world. I write a blog and I found that the more I opened up on my blog, the more I learned about my readers who were experiencing similar things. It’s amazing how many people are in the same boat but don’t say anything because they think they are alone. I found that opening up not only made me feel better because writing it all down was cathartic, but it also connected me with people. I found a network of, essentially, strangers who were encouraging me and supporting me. And it felt so good to be able to do the same for them. - Tori
I was lucky enough to have an extremely supportive husband who let me cry whenever I needed to. My mom was also willing to lend a listening ear. Once I started blogging about my infertility, I connected with many women online who helped me feel I wasn’t alone. Ultimately though, I had to let my Savior Jesus Christ carry my burden. As a religious person, infertility really forced me to rely on my faith, and that helped me through more than anything. - Meredith My friends who had not gone through infertility just didn’t seem to understand what I was going through. So I found the SGF Facebook page and followed it for quite some time before I started interacting. The women on there were open about their treatments and understood the excitement of getting your med shipment, the fears of the ‘what ifs,’ and so much more. I have now met a lot of these women in person and to this day we still have our own online group to support each other. - Heather
There is a beautiful community of strong women on social media who are willing to share their stories and support you through yours. - Allison
I had a close friend and a sister-in-law who sent constant supportive texts, no matter what was happening—whether we had had a positive result, or a negative one, their faith was unwavering. I also had significant integrative support—acupuncture and energetic healing work to help balance the body—but more importantly, the hurricane of emotions. I know I wouldn’t have made it without it. - Anonymous My husband and I find support within each other, first and foremost. We have been there for each other from the beginning and continue to be. We have attended every doctor’s appointment together; we are constant rocks by each others’ side. We also look to others who have been in similar situations, as well as close friends who we can talk to about our struggles. - Ashley
#YouAreNotAlone | 5
Finding Support
My number one support has definitely been my husband. He was and always has been my rock. Even though at times he couldn’t completely relate to my feelings and frustrations, he was always supportive and never let me feel like I was alone in this terrifying journey. I also found tremendous support in my parents. They definitely didn’t understand what I was going through, but they sympathized and were there if I ever needed anything. - Patrice
How would you encourage a friend who was experiencing infertility?
Encouraging Others
I would tell a friend (and I do tell friends) that I would highly recommend them to just start by seeing if she wants a baby and wants a family, she will a doctor to do basic prescreening tests—bloodwork, have one. It may require years, many tears, and ultrasound, HSG, and semen analysis. To see if everything a lot of money. The family she has may not look is normal. No commitment to doing treatment. If like the family she originally imagined. I began something is found to be abnormal, it’s not the easiest seeking fertility treatments at the age of 23; never news to hear, but it at least helps to make more sense of in a million years could I have imagined that I why you are having difficulty conceiving. On a side note, would conceive my beautiful daughters at the as a fertility nurse myself, I often share my story with my age of 26 after six cycles of IVF, the final cycle patients if I feel it will help them get through this journey. being a donor egg cycle. But my daughters are The response is astounding. The patients immediately feel perfect to me in every way, and I am more bonded to me and they so thankful to our anonymous donor, really believe I understand I would give her a hug whom we’ve named Mary after one of what they are going through. and tell her that I know my SGF nurses. I can promise anyone Better trust and rapport is this isn’t easy and in fact that if she has the finances (and definitely established when I do this. - Patrice it really sucks sometimes. SGF has some of the best financial programs I’ve ever known about) and It’s okay to feel the I would tell them that they are wants a baby and will fight for a baby, way you’re feeling. so much stronger than they she will have her baby. It might require And then I would buy give themselves credit for! My a change of heart—a change of heart infertility journey is teaching her some ice cream. open to donor egg, donor sperm, me that I am so strong and - Meredith gestational carrier, even adoption. But that nothing will stand in you will get your baby, and it will be the way of my dreams to be perfect and all completely worth it. a mom. I would also say to be kind to yourself—this journey is - Allison a tough one and you are doing the best you can. If something brings more stress and worry to your life, then let it go—you First thing first is getting the appointment don’t need negativity and stress in your life right now. - Lauren and starting the tests to find the problem and We would remind them to stay strong and find a doctor who seeks the same outcome that you do. Don’t be afraid to talk to others about what you are experiencing. Although it is a stressful, long process, it will be worth the reward in the end— be it your own child or an adopted one. - Ashley
6 | Shady Grove Fertility
take it from there. You can’t come up with a solution until you know the problem. Talk to people! Talking about it with others that have gone through infertility helps out a lot! - Torey
I would let them know that it’s ok to cry and to be angry. Don’t be I would listen to her insecurities... ashamed of those feelings. It doesn’t necessarily help to get things and give specific examples of how I done, but I absolutely believe it’s part of the process. If you need me got through that part of the infertility to sit there with you while you cry, I am happy to do it. I was there process. - Julie once. I did not think growing up that I would need fertility treatment, I would listen to her first. Try and assure especially not IVF, to have a family. Let’s be honest, when playing her that she is not alone. Encourage her dress up with friends, none of us ever went to go see a reproductive to seek help. - Afsheen endocrinologist, we went to the grocery store or the park. No one expects to have trouble starting a family. When you are done with the grieving part, take control of the I would encourage others with three things: have hope, situation...I would beat myself up persevere, and be your own advocate. The doctors are and blame myself. I would play the “what if ” game. What if I had done amazing at what they do, but educate yourself on the something differently…Just make process. Know what is happening to your body and why the call to see someone. The more they are doing what they are. I was misdiagnosed for prescreening we completed, the more years before I went to SGF, but finally after finding the answers we had. The more answers right doctor we started to make headway. I wouldn’t be we had, the more empowered where I am today if I had not known my body well and we felt. Even if the answers were had a doctor who was willing to listen. Our journey was painful, it was liberating to have that 8 and a 1/2 years long and 10 cycles (Clomid, IUI, information and to feel proactive and and IVF), but we now have two beautiful boys. more in control. - Tori
Hang in there :) - Heather
I happened to learn a friend of mine was also facing infertility when we ran into each other at our SGF doctors’ office while checking in. As much as we had talked and hung out in daily life, neither of us had known we were facing the same issues in trying to conceive. It was an instant connection in sharing stories and experiences. It gave us both encouragement that we were not alone in our journeys and could lean on each other for support. - Margie Don’t be ashamed of it, or afraid to reach out for help. Become part of a community of other people experiencing infertility—it will be extremely helpful to you. - Kristen
So many women struggle with infertility, so no one is alone in it. Surround yourself with a great support system. Remember that most people have good intentions to support you even though they may not know how. - Andrea
#YouAreNotAlone | 7
Encouraging Others
We hid our infertility from a lot of people and looking back, I wish we discussed it openly with them because they could have been a great support system. - Devin
How can we break the silence, raise awareness, and remove the isolation of infertility? I wish people weren’t scared to talk about it because we would all feel more comfortable talking about it and wouldn’t feel alone. I want to scream about it to everyone so that people will know more about the process and what you are getting yourself into with infertility. - Torey
This may sound cliché, but we can be a beacon of hope. Do something. I am an open book about my infertility journey. I blogged about it. I have a Pinterest board about it. I share stories on my Facebook page. If my being an open book about it helps just one person to feel more confident and not alone, then I have done something. If there is a local 5k or fun run to raise awareness, do it. Get the shirt and wear it proudly. Let people know that they are not alone. Maybe there will be a woman in the grocery store who sees that shirt and she will feel like it’s a sign to make the call to start her own journey. - Tori
Breaking the Silence
I was scared to tell anyone that we were struggling with infertility because I didn’t want them to look at me and think, what’s her problem? Why can’t she get pregnant? If everyone starts being open about their infertility, I think we will find it more common than we think. - Devin
Women that face fertility issues should overcome their fear of isolation and share their experiences with close friends or online forums. By opening up we can support so many other women and remove the barrier and stigma that infertility is such a taboo subject. It is a problem so many couples face. We should encourage our husbands and partners to also open up and share with others. - Margie For me, blogging about the whole infertility process was really helpful. It was a little scary putting it all out there on social media, but once I did, the response was overwhelmingly positive. So many family and friends reached out with encouraging words and support. The best thing was, many people with their own infertility experiences reached out to me and helped me to know that I was not the only one. - Meredith
By letting those struggling with infertility know that they aren’t alone. And to not be ashamed of your situation. Speak out and help educate those that are experiencing infertility. Let them know there is help out there. You don’t have to hide. - Ashley
Female or male, infertility doesn’t discriminate and any one of us can be a victim of it. Even if we are currently not going through treatment, we can help someone deal with their isolation by being there for them. I have talked about our experience with family and found out three family members have been dealing with infertility issues for awhile. - Afsheen
I love the marketing efforts of SGF. I love the annual events they host and support. I imagine it will just take time for awareness to spread. - Allison
Everyone seems ashamed of their fertility problems and I don’t know why. We can start by teaching others. - Anonymous
8 | Shady Grove Fertility
TALK ABOUT IT OPENLY! It’s such a shame that we hold these issues in and don’t discuss it openly. There are so many people dealing with infertility and it is important to share our stories and support one another. If you had diabetes or hypertension, you wouldn’t be as afraid to discuss that. Well infertility is a medical issue as well that needs proper testing and sometimes medication and treatment in order to manage it. If we bring the issue to the forefront, it will help millions of men and women who are struggling with infertility and are afraid to ask for help. - Patrice Don’t be afraid to talk about your experience. The more we share our stories, the more we remove the stigma often associated with an infertility diagnosis! - Kristen
Start by talking to your friends and family. I was surprised how many people I know have experienced infertility or pregnancy loss and I never knew. Don’t be embarrassed by your journey—infertility is not our fault—it is a disease just like cancer or diabetes. - Lauren
Don’t be ashamed to tell your story as long as you are open to answer questions. Most people are amazed at the process when they learn about all of the different parts. - Andrea
Talking about infertility and realizing that it is much more common than we realize helps so much. If you had cancer you would seek treatment, so why does infertility have to be any different? Being open about it brings healing and hope. - Heather
I think as more and more people (regrettably) have this experience, the walls will come down. So many people are running into problems, it’s not the “unusual” experience it was even 10 years ago. When people start being more able to be open about their experiences, it will encourage those still in the trenches. - Anonymous
WAYS TO SPREAD AWARENESS + HOPE Let Your Voice Be Heard Raising awareness about infertility can take many forms. It can occur on a national level by contacting your congressional representative or becoming a spokesperson. It can occur on a community level, by participating in local events like the annual Walk of Hope. It can even occur on an individual level, because connecting with even one person can make a significant difference. Donate to RESOLVE
Advocacy Day, which typically is scheduled in May each year, is a RESOLVE event in which the community speaks with members of Congress to promote increased access to family building options and financial relief. Many infertility advocates attend in order to educate elected officials, feel a sense of control if they are experiencing infertility, show their support—especially if they have a loved one touched by infertility, or gain a deeper understanding of the issues inherent to infertility. Practicing advocacy can be more than a yearly event. Become a grassroots advocate with RESOLVE to help build a state advocacy infrastructure so that RESOLVE can fight anti-family bills across the country.
Attend the Walk of Hope The Walk of Hope provides the opportunity for the infertility community to come together to raise awareness and help fund support groups, public awareness initiatives, and legislative advocacy efforts. Walks are held around the country throughout the year. Find one in your local area, visit resolve.org. Share Your Story Throughout the year, Shady Grove Fertility invites patients to share their stories with our community. These stories can provide hope, but more importantly, they embody the concept of community and that patients are never alone on their journey. Visit ShadyGroveFertility.com/share-yourstory.
#YouAreNotAlone | 9
Breaking the Silence
Donating to RESOLVE: The National Infertility Association ensures that support is available for everyone diagnosed with infertility; that legal access to family building is protected in all 50 states; and that RESOLVE will fight for the removal of financial obstacles to family building through public policy and insurance reform. Donations of any size are welcomed and valued, and you can even honor someone with a tribute donation.
Participate in Advocacy Day— and advocate throughout the year
You Are Not Alone on your journey to parenthood
Shady Grove Fertility is a leading fertility and IVF center of excellence offering patients individualized care, innovative financial options, and pregnancy rates among the highest of all national centers. Since 1991, more than 37,000 babies have been born to patients from all 50 states and over 35 countries around the world. Shady Grove Fertility physicians actively train residents and reproductive endocrine fellows and invest in continuous clinical research and education to advance the field of reproductive medicine through numerous academic appointments and partnerships with Georgetown Medical School, Walter Reed, and the National Institutes of Health. Our team of reproductive endocrinologists, Ph.D. scientists, geneticists, and more than 600 highly specialized Shady Grove Fertility staff care for patients throughout Pennsylvania, Maryland, Virginia, and Washington, D.C. For more information, call 1-888-761-1967 or visit ShadyGroveFertility.com.