Thursday, April 23, 2015

You Are Not Alone NIAW 2015

Every month, a group of women from all over Westchester County gather together and talk about infertility in a safe space. During this monthly RESOLVE support group meeting, women show up and talk about the challenges, heartbreaks and devastations that infertility inflicts. If the group is going as it should, as the leader, I usually sit back and let the women talk amongst themselves and take ownership of the group, taking it where it needs to be for that evening. By the end of the meeting, group members who initially felt all alone before coming to the group are now exchanging phone numbers with veteran group members. A supportive safety net develops.
I always bring my group members chocolate and potato chips.

As a mental health provider to infertility patients, I am often the first person that a patient will talk to, outside of her partner or doctor, about her struggle with infertility. I also am often the only other person she has ever spoken to that has also struggled with recurrent pregnancy loss, infertility or endometriosis. Usually, before the patient and I even start to address the anxiety or depression that often accompanies infertility, I initially spend time with my patient validating her experiences and feelings. I assure her she is not “crazy” and that she is truly in crisis and that this is a traumatic time for her.

 Most patients who come to me feel completely isolated from their family, friends, co-workers and really from society at large. Infertility is not yet understood or recognized as the devastating mental and physical health crisis that it truly is. The fertile world has yet to learn how to respond compassionately to the 1 in 8 struggling with infertility, either ignoring patient’s realities or saying hurtful and ignorant things to those already struggling. Patients are left to suffer in silence, alone, which only deepens the sense of loss that a patient is already feeling.  

I always make sure to send patients resources to get them connected and invested in the infertility community. I encourage patients to follow me on twitter and I introduce them around to the infertility community there. I tell them to look at the RESOLVE website and find a support group in their area. I encourage patients to participate in RESOLVE Advocacy Day and meet other patients from across the country who have been deeply impacted by infertility.  If she is an endometriosis patient as well as an infertility patient, I send her other helpful resources to find support and understanding. Connecting to others and reaching out during this time of crisis has a positive impact on mental health. It is much harder to feel alone when you are connected to others that get it and empowered.

As a health care provider in the infertility world, my job essentially is to try and be a net that holds patients in a protective space while they are struggling. My job is to connect patients with resources that will help lift their spirits during this difficult time. I cannot make patients feel less scared or more certain about their future, because I have learned that infertility is unpredictable to its’ very core. I cannot control the outcomes of patients’ family building journeys, although I wish with all my might  that I could. But, what I can do is help patients feel less alone by not only my individual work with them, but more importantly, by connecting them with others who are in the trenches struggling with infertility on a daily basis.

Proud to be blogging as a part of RESOLVE's Bloggers Unite during National Infertility Awareness Week. For more information about infertility please check out:
  •  (Basic understanding of the disease of infertility.)
  • (About NIAW)
  •  Also if you are an infertility and/or endo patient please check out my documentary which I hope will make you feel less alone.

    Thursday, April 16, 2015

    EndoTruths: Infertility and Mental Health

    Endometriosis and Infertility each can be devastating in their own right. But, experiencing both at once,  often leaves patients to suffer for years through misdiagnosis and mistreatment from the medical community. By the time patients get the help they need, often their fertility has been compromised and their feelings of anxiety and depression are overwhelming.

    I reached out to the endometriosis community and asked patients to come and meet up to speak about their experiences with the disease. What came from this was 8 hours of footage of patients bravely talking about their unbelievable journeys with endometriosis and infertility. Their stories were heartbreaking, yet their spirits unbreakable. They spoke from their hearts and from their souls. They talked about how devastating the disease has been and the impact it has had on their mental health. They talked about what gets them through the day and what gives them hope, despite their pain.

    I am incredibly grateful to these brave souls who came and testified. I know their stories will help others. Many MANY thanks to Dr. Sallie Sarrel , Jen Rutner , April  , Amanda , Marin , Lauren Tait, Lauren, Colleen, Chelsea Kern and Joe Faller, our needed male perspective, for your time and for sharing your story.

    I have never been more proud of a project. I feel this represents so much of what I cover in my daily work counseling patients worldwide and through my group work through RESOLVE and EndoWarriors. The more we talk about these issues, the less patients will feel all alone.
    You are not alone. We are all in this together.

    Sunday, April 12, 2015

    EFA Patient Awareness Day

    It was such an honor to talk to endometriosis patients about the affects of endo and infertility at the Endometriosis Foundation of America Patient Awareness Day. For those of you that couldn't be there here is my talk!

    Endometriosis and Infertility

    Intro: Hi there, my name is Casey Berna. I am an endometriosis patient myself; I have had two excision surgeries with Dr. Seckin and four endo related surgeries before I found him.  I am also an infertility and recurrent pregnancy loss survivor.  I am a social worker and I do therapy with endometriosis and infertility patients and I also run monthly support groups through Endowarriors and resolve.


    Important Things to know about Endometriosis and Infertility

    1)      This is hard and you are all superwoman. Having endometriosis, a chronic, painful disease is INCREDIBLY difficult. Navigating infertility is a devastating struggle. When you put these two things together, it creates a physical and emotional crisis that is not really recognized by most doctors, co-workers, family, friends and society in general. Handling one of these things is exhausting and all consuming, handling both at once takes superhuman powers, which in my professional experience, most endometriosis patients seem to possess.

    2)      Be gentle with yourself, take care of yourself. Just because you have superhuman powers doesn’t mean you have to use them all the time. Feel free to say no to moving your brother into his new home, skip Cousin Susie’s baby shower or opt out of visiting your friend in the hospital who just had her third baby. I give you permission, no I demand you to protect your heart, body and your spirit during this time of crisis.  When you can remove any toxic people or situations in your life that suck all of your energy and bring you more stress.  I have one patient who calls her mom right before her transfers and tells her she can’t talk to her for a week. During this time, I feel like many of us are just doggie paddling through life, you don’t need someone or something to pull your head below water if you can avoid it.

    3)      Be aware of the emotional impact endo and Infertility. Many patients struggle with anxiety and depression. Endo causes fatigue, pain and the diagnosis and treatment of the disease is not simple. Patients undergoing infertility treatments, seeking out third party reproduction or going through the adoption process, often have hope, but their struggle is real and they often feel a lack of control and uncertainty. There are real stressors, financial emotional and physical often associated.  These experiences can be isolating.  Getting involved in the endo and infertility communities changed my life. Connecting with other women online who are going through similar things or attending a local RESOLVE support group can truly help. Get connected. And parts of endometriosis and infertility are downright traumatic. If you feel like you are drowning, reach out; find a good therapist who understands endo and infertility. It will help so much.

    4)      Be your own advocate. I have worked with so many patients who, even at the top clinics, have had their endometriosis dismissed or ignored when seeking fertility treatments. Listen to that little voice inside of you when it says that something doesn’t seem right or feel right.  Listen to your body. Educate yourself. Go online. That right I am ENCOURAGING YOU TO GOOGLE. Ask questions in the reliable forums. Read the articles posted on the endometriosis specialists sites regarding infertility.  If your dr. dismisses your questions or the information from specialists or dismisses the role endometriosis can play in infertility, find a new doctor. This is your body. Believe in yourself. Remember you are superwoman.  

    5)      Keep faith in yourself. Family building is a stressful and invasive process, it is so intense. Endometriosis can also be an intense, invasive and relentless disease. So many patients come to me saying they feel broken, broken on both a physical and psychological level. There is so much uncertainty, fear and sadness that come with all of this. One of my endo patients, a staple in my RESOLVE group, is an incredible support to others, her warmth and smile light up the room.  She texted me the other day to say her latest IUI failed, and after a very long road, she only has one more left to try. She is losing faith. After cursing the universe for her, I told her that I have no idea how this is all going to come out in the end but that I have faith in her as a person, faith in her beautiful relationship with her partner, and faith that no matter what comes, she will be able to find the strength and tools to figure out her path. This process can make us lose ourselves. But the truth is each one of us is incredible individuals with gifts and strengths. Even though you may not feel it at times, you are more than your endo and you are more than your fertility capabilities.