From Patient to Patient Advocate
I feel distinctly honored and humbled at having been trusted with the serious effort of taking on the President of the Board of Directors for AllPaths Family Building. Working with Kate Weldon LeBlanc, Emily Lindblad and Jennifer Redmond (as Past President) is truly an awesome honor.
But who am I?
This is the story of me.
Or at least the story of me, condensed into 1,000 or so words.
Lisa, Kate, Emily, and Jennifer at the 2024 New England Fertility Society Annual Meeting in May.
Lisa, Kate, Emily, and Jennifer at the 2024 New England Fertility Society Annual Meeting in May.
Given that my journey to family building started 37 years ago, I’ll give you a break and spare you some of the details.
It’s also the story of my family.
I grew up, not playing with dolls, not dreaming of babies, not babysitting. When I was old enough to work, I picked waitressing.
Four years into marriage, it hit and it hit hard.
Baby.
Baby.
Baby.
The urge, instinct, need, desire- all commingled into purpose.
We were ready.
Time for the expanded family, everything all set in place, Bill and I were ready.
At 26, I assumed that I would have no problem. That we would have no problem. I assumed, like so many of us, that I’d spent years trying to avoid pregnancy, and that as soon as I was done preventing it, voila, we’d be all set.
Except, my best friend since I was 5? Same age, and she had problems. And, as it turns out, months passed and nothing happened for us.
Pamela Madsen is a force of nature and my alternate person.
Within our combined struggle, we started volunteering, then ran RESOLVE NYC together. It was a relief to be able to focus on advocacy- supporting ourselves and others in their family building challenges. The support, legislative work, collaboration all helped me focus on something other than my own dismal results.
Growing into my role as a Patient Advocate (note the capital letters! lol) brought tremendous comfort and a sense of purpose. (Thank you, Illume Fertility for being a cherished space for me to work for 17 years!)
Unexplained infertility is both its own kind of hell and its own diagnosis. It does not mean nothing’s wrong; it means that the testing isn’t yet sensitive enough to determine what’s wrong.
**TW- violence is mentioned here-
I threatened my Reproductive Endocrinologist (sorry Ben Sandler!). I don’t recommend it now, but I believe my exact words were, "if you tell me one more time how perfect everything looks and how perfect this cycle was, when there’s no pregnancy, I’m going to kill you!"
Be that as it may, treatment is the same.
So first, insurance coverage? Not a thing, so figuring out what to give up, what to delay and how to pay for treatment.
Maybe if that hadn’t been an issue, we would have moved to IVF more quickly, but that was a financial hurdle we couldn’t overcome.
Yet.
So IUIs were our solution. So many of them. Given that this was 37 years ago, it wasn’t out of the question to do 5. Or 6. Or more. I didn’t lose count exactly, but I also kind of did.
And the outcome was the same.
No.
No.
No.
No.
No.
And more no.
Years of no. Over 2,160 days of no baby.
As a schoolteacher in New York City, I took care of and taught other people’s children, while feeling grief and loss over and over again. I threw myself into patient advocacy volunteering, organizing educational symposiums for over 1,000 people, with over 250 speakers. I edited and published magazines for The American Fertility Association.
I did all I could to help others have their babies, while my lap was empty, and my heart ached.
A bright spot during those six plus years was that I discovered the concept of a “safe” baby. (More about that in a later post.) Simply put, there were a few babies during that almost 7 years that I discovered did not emote tears, but rather comfort. There was typically no rhyme or reason as to which babies brought envy and which brought comfort.
What I also uncovered, deep in my heart, that’s been confirmed in the 3 decades since thousands of times- my, and many other's, biggest fear: I would be the one with no baby at the end of all our efforts.
My personal story is one that I have never shared publicly. My point of view on that is that it is not just my story. It is also my husband’s story, my mother’s story, my sister’s story and my children’s story.
So here is my abbreviated version. Interested in the whole thing? Call me anytime - 978-763-6504, I’ll be happy to speak with you about it one-on-one.
In seeing an ear, nose and throat doctor for my chronic sore throat, it was seen that my thyroid was enlarged. My blood levels were always normal, and I was assured by the ENT and my RE that this was NOT the reason I could not get and stay pregnant.
Be that as it may, within 6 months of taking medication to support my thyroid, I got a yes.
Yes.
After 6 and a half years, just as Bill and I decided to stay childfree (my choice to use that term, based on Sweet Grapes, a book by Jean and Michael Carter) my dreams came true.
I was pregnant. And while there was staining, but not bleeding, throughout almost the entire pregnancy, there was also a baby at the end of 9 months.
Interestingly enough, this did not end my journey. In fact, the course of my life was permanently changed by the trauma, strength building, determination and hope of having to build my family with assisted reproductive technology.
It was clear to me that this was what I was supposed to do in my life- help support, advocate and educate others who were also looking to build their families.
Some things have changed dramatically- pregnancy rates, thank goodness. Science, technology, and medicine have bounded forward. What has not changed? Only 11 states have mandated insurance laws and even within those states, there are many who must pay out of pocket. Fertility treatment is still extremely expensive, financially, emotionally, physically, societally.
I want to leave you with this. You are not alone, even if you feel like you are- a tag line that gets used a lot, I know. We mean it. We are here for you. We are here because of you.
We are here and will be here, without judgment, with compassion and with dedication. Lean into us. We can take it.
And we can help.
Lisa Rosenthal has over thirty years of experience in the fertility field. After her personal infertility journey, she felt dissatisfied with the lack of affordable, comprehensive services available to support her and others.
Determined to help others undergoing fertility treatment, Lisa has done so through working for Patient Advocacy groups and with Illume Fertility, where she serves as Patient Advocate and Senior Content Strategist. Lisa serves as President of the Board of Directors of AllPaths Family Building and is a member of the Affordable Families Coalition and ASRM.
She is also the teacher and founder of Fertile Yoga, a research-based program (lead author on research accepted by ASRM), designed to support all people on their quest for their families through gentle movement and meditation. Lisa also leads Ladies Night In/Couples Night In/Mens Night In and peer support groups. She has written over 1,400 blogs on the topic of reproductive health.
Photos compliments of Lisa Rosenthal
Given that my journey to family building started 37 years ago, I’ll give you a break and spare you some of the details.
It’s also the story of my family.
I grew up, not playing with dolls, not dreaming of babies, not babysitting. When I was old enough to work, I picked waitressing.
Four years into marriage, it hit and it hit hard.
Baby.
Baby.
Baby.
The urge, instinct, need, desire- all commingled into purpose.
We were ready.
Time for the expanded family, everything all set in place, Bill and I were ready.
At 26, I assumed that I would have no problem. That we would have no problem. I assumed, like so many of us, that I’d spent years trying to avoid pregnancy, and that as soon as I was done preventing it, voila, we’d be all set.
Except, my best friend since I was 5? Same age, and she had problems. And, as it turns out, months passed and nothing happened for us.
Pamela Madsen is a force of nature and my alternate person.
Within our combined struggle, we started volunteering, then ran RESOLVE NYC together. It was a relief to be able to focus on advocacy- supporting ourselves and others in their family building challenges. The support, legislative work, collaboration all helped me focus on something other than my own dismal results.
Growing into my role as a Patient Advocate (note the capital letters! lol) brought tremendous comfort and a sense of purpose. (Thank you, Illume Fertility for being a cherished space for me to work for 17 years!)
Unexplained infertility is both its own kind of hell and its own diagnosis. It does not mean nothing’s wrong; it means that the testing isn’t yet sensitive enough to determine what’s wrong.
**TW- violence is mentioned here-
I threatened my Reproductive Endocrinologist (sorry Ben Sandler!). I don’t recommend it now, but I believe my exact words were, "if you tell me one more time how perfect everything looks and how perfect this cycle was, when there’s no pregnancy, I’m going to kill you!"
Be that as it may, treatment is the same.
So first, insurance coverage? Not a thing, so figuring out what to give up, what to delay and how to pay for treatment.
Maybe if that hadn’t been an issue, we would have moved to IVF more quickly, but that was a financial hurdle we couldn’t overcome.
Yet.
So IUIs were our solution. So many of them. Given that this was 37 years ago, it wasn’t out of the question to do 5. Or 6. Or more. I didn’t lose count exactly, but I also kind of did.
And the outcome was the same.
No.
No.
No.
No.
No.
And more no.
Years of no. Over 2,160 days of no baby.
As a schoolteacher in New York City, I took care of and taught other people’s children, while feeling grief and loss over and over again. I threw myself into patient advocacy volunteering, organizing educational symposiums for over 1,000 people, with over 250 speakers. I edited and published magazines for The American Fertility Association.
I did all I could to help others have their babies, while my lap was empty, and my heart ached.
A bright spot during those six plus years was that I discovered the concept of a “safe” baby. (More about that in a later post.) Simply put, there were a few babies during that almost 7 years that I discovered did not emote tears, but rather comfort. There was typically no rhyme or reason as to which babies brought envy and which brought comfort.
What I also uncovered, deep in my heart, that’s been confirmed in the 3 decades since thousands of times- my, and many other's, biggest fear: I would be the one with no baby at the end of all our efforts.
My personal story is one that I have never shared publicly. My point of view on that is that it is not just my story. It is also my husband’s story, my mother’s story, my sister’s story and my children’s story.
So here is my abbreviated version. Interested in the whole thing? Call me anytime - 978-763-6504, I’ll be happy to speak with you about it one-on-one.
In seeing an ear, nose and throat doctor for my chronic sore throat, it was seen that my thyroid was enlarged. My blood levels were always normal, and I was assured by the ENT and my RE that this was NOT the reason I could not get and stay pregnant.
Be that as it may, within 6 months of taking medication to support my thyroid, I got a yes.
Yes.
After 6 and a half years, just as Bill and I decided to stay childfree (my choice to use that term, based on Sweet Grapes, a book by Jean and Michael Carter) my dreams came true.
I was pregnant. And while there was staining, but not bleeding, throughout almost the entire pregnancy, there was also a baby at the end of 9 months.
Interestingly enough, this did not end my journey. In fact, the course of my life was permanently changed by the trauma, strength building, determination and hope of having to build my family with assisted reproductive technology.
It was clear to me that this was what I was supposed to do in my life- help support, advocate and educate others who were also looking to build their families.
Some things have changed dramatically- pregnancy rates, thank goodness. Science, technology, and medicine have bounded forward. What has not changed? Only 11 states have mandated insurance laws and even within those states, there are many who must pay out of pocket. Fertility treatment is still extremely expensive, financially, emotionally, physically, societally.
I want to leave you with this. You are not alone, even if you feel like you are- a tag line that gets used a lot, I know. We mean it. We are here for you. We are here because of you.
We are here and will be here, without judgment, with compassion and with dedication. Lean into us. We can take it.
And we can help.
Lisa Rosenthal has over thirty years of experience in the fertility field. After her personal infertility journey, she felt dissatisfied with the lack of affordable, comprehensive services available to support her and others.
Determined to help others undergoing fertility treatment, Lisa has done so through working for Patient Advocacy groups and with Illume Fertility, where she serves as Patient Advocate and Senior Content Strategist. Lisa serves as President of the Board of Directors of AllPaths Family Building and is a member of the Affordable Families Coalition and ASRM.
She is also the teacher and founder of Fertile Yoga, a research-based program (lead author on research accepted by ASRM), designed to support all people on their quest for their families through gentle movement and meditation. Lisa also leads Ladies Night In/Couples Night In/Mens Night In and peer support groups. She has written over 1,400 blogs on the topic of reproductive health.
Photos compliments of Lisa Rosenthal
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