We are ENDOSTRONG

Recently, I heard Dr. Tamer Seckin, co-founder of the EFA and a leading world expert in endometriosis surgery, describe endometriosis as a disease in which the patient feels as though she is constantly being tortured.   I thought that was quite an accurate description of a disease that has plagued me since I was 14 years old. Chronic pain and fatigue, excessive bleeding and swelling, diarrhea and bladder issues are just some of the many symptoms that I and so many other women in the endometriosis community face on a daily basis.

Unfortunately, the general public is largely unaware that this disease exists, never mind the tremendous impact it has on our lives.  So we are often dismissed as constantly sick for no good reason, weak and even hypochondriacs. No one can see the way our organs are fused together or how adhesions are often pulling our insides in a way that can make even standing up extraordinarily painful.  As wives, daughters, mothers, friends, co-workers, and students we are expected to live up to our societal responsibilities and roles as we endure the physical and emotional side effects of this debilitating disease.  We often choose to suffer in silence and carry the burden of this disease alone, because honestly, it is a hard and often awkward disease to explain, “You see, it all started when the lining of my uterus somehow escaped my uterine cavity…”  But we know we are not hypochondriacs. We are simply amazing.

Endometriosis patients are some of the strongest, most determined and most resilient women I have ever met. We are ENDOSTRONG.  What does ENDOSTRONG mean?  ENDOSTRONG means listening to our bodies when we need to take a sick day or even medical leave because the disease is too overwhelming. ENDOSTRONG means choosing another doctor because we are not getting the medical treatments we need. ENDOSTRONG means bravely facing our 3^rd, 4^th, or in my case, 5^th endometriosis related surgery with no guarantee of relief, only a hope and a prayer that it will work.  ENDOSTRONG means accepting the lifestyle limitations endometriosis can bring and accepting the help of those around us when things get bad.  ENDOSTRONG means addressing the emotional impact of this isolating disease whether it’s seeing a therapist or joining a support group.  ENDOSTRONG means taking the time to take care of ourselves even though we as women have been taught from an early age to put our needs last.  ENDOSTRONG also means helping to take care of each other by forming a supportive community and sharing our stories and experiences. ENDOSTRONG also means raising public awareness and banding together to find a cure.

Who is ENDOSTRONG?  The nurse, who despite her pain, gets out of bed and works the night shift taking care of critically ill patients is ENDOSTRONG.  The young professional who passes her tax exam shortly after recovering from surgery is ENDOSTRONG.  The hopeful mother who is on her 5^th IVF cycle after experiencing multiple losses is ENDOSTRONG.  The high school senior who despite missing her graduation because of her period manages to keep a positive outlook on life and have hope for the future is ENDOSTRONG. All of the women in third world countries who cope with this excruciating disease without any healthcare, medications or surgical relief are certainly ENDOSTRONG.  We all are the faces of endometriosis and together we are a force to be reckoned with.

I am proud to be a part of this community of women. We are survivors.  Every day we accomplish the ordinary while dealing with the extraordinary. It is an honor and a privilege to be working with the Endometriosis Foundation of America and, through these blogs, to be able to communicate with even more members of the endometriosis community. I hope we can start an endometriosis revolution and combine our extraordinary strength to raise money to find a cure for this disease while raising public awareness for our cause.   My dream is one day when my daughter is grown, 20 years from now, she will say, “Wow, I can’t believe when you were growing up so many people never even heard of endometriosis.  I am so glad they found a cure. ”

To help spread awareness and raise money for endometriosis research,  I have started a store on Zazzle where any proceeds I make from the sales will go directly to the Endometriosis Foundation of America. I was inspired by my friend,  Jen Rutner , who has been selling the #hope T-shirt for years now!  We have t-shirts, we have onesies, we have furbaby accessories and we also have ENDOSTRONG stickers specifically designed to fit onto Sharps containers for ENDOSTRONG women who are cycling. Please check the store out and let me know what you think!

You will also be able to find my official EFA blogs posted in the future at  http://www.endofound.org/ . But please note this is my personal website and posts on this site may or may not reflect the views, mission and beliefs of the EFA. 

How We Soared: Advocacy Day 2013

 

I am having trouble putting into words one of the most incredible experiences of my life.  I am not the same person that I was before I attended RESOLVE’S Advocacy Day on May, 8 2013 in Washington, D.C.. I went to Advocacy Day proud to represent the infertility community and excited to advocate for those who are in the midst of their struggles. I also went to Advocacy Day to educate the fertile community, many of whom do not see infertility as a medical issue but rather as an unfortunate circumstance that adoption can cure.  Adoption is a phenomenal option for couples struggling with infertility, but medical procedures that treat the disease should also be viable, affordable options for building a family. My hope in participating in Advocacy Day was that by starting conversations with our Congressional representatives about our journey, we could chip away at the stigma placed on infertile couples so that when my daughter reaches adulthood she will not have to fight so hard to get the services she may need. More fundamentally, I wanted to break the silence surrounding this condition that so often leaves couples feeling helpless and misunderstood.

So I packed my superhero cape and my fancy new suit dress, and traveled to D.C. ready to save the infertile men and women of the world. But what RESOLVE and the amazing infertile community did when I got there was take my cape off and wrap it tenderly around my shoulders, like a blanket, and healed my heart in a way I didn’t think possible.  The night I arrived there was a reception that allowed the advocates to socialize in a more informal setting. It was there I finally got to meet some of the amazing women I had been in contact with on the internet for several years.  And I had the pleasure of speaking to other women whom had traveled from all over the country. Although I had not met any of these incredible women before, there were no awkward conversations. We all had the common thread of infertility to break the ice.  We were part of a sisterhood forged by pain, heartache, devastation, humility and loss.  Sometimes infertility can make you feel so alone, even if you are in a room with 100 people. Simply walking into the reception and feeling that I was immediately understood, down to my deepest insecurity and vulnerability, made the 5-hour train ride to D.C. worth it.

After the reception, a group of us went out to dinner. As we introduced ourselves, I was humbled and honored to be with such a strong group of women.  We sat and talked like we had known each other our whole lives. No one asked me, “Are you going to have more children?”  No one said, “Maybe if you just relaxed, it could happen.”  Experiencing infertility has changed the way I view the world, and these women had the same unique world view that I did. They too get a sick feeling in their stomach when they walk by the pregnancy tests in the local drug store.  They too have had to bravely congratulate and buy baby gifts for so many friends who are now on their second, third or maybe even fourth child.  Talking with these women about shared experiences was, for me, very uplifting and healing.

The next morning, before we left to speak to our Congressional leaders, there was an information session on the importance of being at Advocacy Day.  I cried as women got up and shared their experiences of pain and loss with the audience.  Their pain was my pain. My passion for the cause was further ignited by speakers reminding me that we had everything to gain by speaking with our representatives today and nothing left to lose.  Infertility had already taken so much from us already.  The rest of the day I walked through the offices of Congress talking to aides who can actually make a real difference in the world.  I told them my story, and how the two bills we were advocating for were so very important. I shook their hands, looked them in the eye and asked them if I had their support.  Wow.

How could I be doing all of this? There were days along my journey that I felt completely broken. Suffering from endometriosis, a disease that causes infertility and chronic pain (as if I didn't need a constant reminder of my condition), there are STILL days I feel completely broken.   Some days at the lowest points of my journey, it is so difficult to stop feeling devastated to the core. It often takes a conscious reminder to say, “Even though my reproductive parts are broken, I am not broken. I am not just my reproductive parts. Before I went to D.C. for Advocacy Day, I kept saying to my husband, “I cannot believe I am doing this. Can you believe I am doing this?”  When you feel physically sick, hormonally unbalanced and emotionally drained for so long, sometimes taking a walk down the street seems like an insurmountable feat.  After I stopped trying to conceive last year I have been slowly healing and coming to terms with the profound, lasting impact infertility will have in my life.  Going to D.C. to advocate for the infertility community helped me to heal those broken pieces.  As I got on the train back to New York that night, I felt a little more whole.

 It was then that I started thinking about how getting a bill passed is actually very similar to an infertile person trying to conceive. That is why the RESOLVE advocates are the fiercest, most competent advocates to hit Capitol Hill.  There will be times when we will have to navigate lots of red tape and do a lot of the leg work ourselves and yet we will channel the patience and tenacity to get the job done.  There will be times when we may have to convince other professionals WHO SHOULD KNOW BETTER that there is absolute truth in what we are saying and yet we will stand by our convictions even though we may be dismissed or even persecuted for our beliefs.  There will be times on our journey that we may have to compromise to reach our ultimate goals and yet we will find a way to work with what we have been given for the greater good.  There will be times that we are willingly acting under the uncertainty that all of our hard work and fighting may lead to nowhere and yet will keep strong our focus and determination. There will be times that we will feel hopeless and discouraged by this difficult process and yet we will dig deep and stay afloat.  Sound familiar? This is what infertile women do every day.

Allow me to re-word a quote from Dr. Martin Luther King, Jr., “The ultimate measure of a (wo)man is not where (s)he stands in moments of comfort and convenience, but where (s)he stands at times of challenge and controversy.”  I would like to thank all of the women whom I was privileged to stand beside on Advocacy Day.  I would like to thank RESOLVE for doing an incredible job of organizing this event.  I am a better person for having met all of you and for having been there.  I am so incredibly grateful for the opportunity to change infertility from a condition of powerlessness and despair to a cause for empowerment and strength, when for so long it has led me to feel broken and inferior. Here’s to seeing even MORE of you for Advocacy Day 2014. Next year I will not bother packing my super hero cape. The ability to stand united and tell our stories is what allowed our hearts to soar.

How to Help:

I urge you to check out the two bills we are advocating to get passed. Write to your Congressional Leaders and ask them to support these measure that help those in the infertile community.

The Family Act: This bill makes infertility treatments more affordable to middle class families.

http://www.resolve.org/get-involved/family-act-of-2011.html

The Women Veterans and Other Healthcare Improvement Act: The bill gives access to the needed infertility treatments that wounded veterans need to conceive and start a family.

http://www.resolve.org/get-involved/women-veterans-and-other-health-care-improvements-act.html