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:
  • http://www.resolve.org/about-infertility/what-is-infertility/  (Basic understanding of the disease of infertility.)
  • http://www.resolve.org/national-infertility-awareness-week/about.html (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.

    Monday, March 23, 2015

    5 More Sleeps Until EndoMarch and EFA on Today!

    Are YOU Excited? Because WE are SUPER Excited!!
    Are you coming to the Today Show Plaza this Saturday March 28th for Endometriosis Awareness?
        Here are some last minute details to keep in mind!
    1)      Have you registered? If not register here. Don’t forget to tell Today that you are here for Endometriosis Awareness. If you or a loved one do not register beforehand, NO WORRIES, you can register that day on the plaza.

    2)      Have you made your poster yet?  My poster is shown above! This is the poster that the wonderful interns at the EFA made. 
    Make your poster catchy and bright! You also will be able to make posters at the PLAZA, they will have paper and markers.  Have your loved ones make posters that say catchy things & tell a story like, “My Aunt Katie rocks Endo.” or “All the way from Canada for Endometriosis Awareness.”  “Jersey Girls Fight Endo.”  “My best friend fights endo.”

    3)      Yellow! Yellow! Yellow! Be fun and creative! Wear a yellow shirt or scarf. Come with a yellow hat or funny yellow glasses. We are looking to grab the attention of the Today Show. They are into fun, passionate and energetic crowds. Dollar stores have great yellow merchandise.

    4)      I am getting to the Plaza around 6am to line up. You can line up at the corner of 48th street and Rockefeller Plaza. I am encouraging all of those who want to be seen to get there early. It is a first come first serve attitude when it comes to getting your spot. They will let the crowd in just before 630.  I am requesting that we leave room for some organizations in the front row so that they have a better chance to be interviewed about their work.

    5)      Logistics: You can bring a knapsack into the plaza, it will just have to be searched by security. Food, drinks and snacks can be brought in. You can bring cameras and cell phones. Dress comfortably AND WARMLY, there is a lot of waiting around and hanging out. If you need to take a break, you can leave and come back.  Next store, 30 Rockefeller Plaza,  has a downstairs public space which has a Starbucks, lots of other dining options and public seating. If you need a break, you can go there and hang out. After the Today Show, I encourage all patients to go there to hang out for a little bit and be together.

    6)      Weather: So far, the weather looks like it is going to be good. But keep checking the weather and get a yellow poncho or umbrella in case of rain. We will be there rain or shine.
     

    7)      If you have any questions please contact me, caseyberna@gmail.com . Thank you for participating. Our main goal is to have the word endometriosis said on the Today Show on March 28th.  Obviously, it is a little discouraging that none of the major news networks have done a segment on endometriosis, a disease that effects 1 out of every 10 women and that takes 10 years of suffering on average for a women to get diagnosed. So if they won’t come to us we ARE COMING TO THEM!!!!!!!
    

    Saturday, February 28, 2015

    Endometriosis and Infertility Awareness Videos 2015

    Hello valued endometriosis community members! I am putting together three separate videos for Endometriosis and Infertility Awareness. Two of the videos will explore the effects that endometriosis and/or infertility have on mental health. One of the videos is entitled “think endometriosis” and will talk about the effects that misdiagnosis and mistreatment have on the patient, the quality of life and their fertility.

    These videos are for education purposes and also to help other patient feel less alone. Infertility and endometriosis have a profound impact on mental health.  Anxiety and depression are a common side effect of struggling with these diseases. Yet, it is not often talked about or it is ignored. Trauma and grief are also a big part of the lives of women suffering from these illnesses, yet women don’t always know they are experiencing these things.  It is time to shed some light on these issues to help patients understand what they are feeling. Mental health care providers need to be sensitive and aware of these patient needs so that they are not dismissive. Doctors need to not only treat the physical needs of each patient but ask the patient how their emotional health is and give them resources for extra support.

    My “Think Endometriosis” video is directly aimed at educating the medical community at large. So often the patient’s journey to seeing an excision specialist is a harrowing one filled with well meaning, but uneducated doctors that do more harm than good. I first started going to a gastroenterologist at the age or 19. Had he diagnosed me, I would have had far less surgeries, far less pain and would have made better choices regarding my fertility. I have talked with women who have gone to the top reproductive endocrinologists that this country has to offer and yet their advanced endometriosis was missed and their treatments unsuccessful and written off as unexplained.

    It’s time to bring these horror stories to the forefront in hopes that doctors educate themselves and change the way they treat endometriosis patients and think about endometriosis. Most often women do not have the energy to confront the doctors that are not giving them the treatment that they need or those who have mistreated them. They simply move on to someone who can help them and not look back.  Hopefully sharing these stories will help patients who suspect endometriosis not have to go through the cycle of trauma that other patients have endured before them. Maybe even well meaning doctors who may see this video will change their ways.


    When: Saturday March 7th from 10am -2 pm . I will have brunch available in the conference room for patients to socialize and will assign half an hour increments where I will take each patient into another room and record them.

    Where: Maria Droste Counseling Services 33rd and Madison http://mdcsnyc.org/

    What: I will ask patients a series of questions regarding their journey to diagnosis. I will ask patients to open up about the emotional toll endometriosis/infertility has taken on their lives, their relationships, the way they view themselves and their overall mental health.

    I am going to post the video on my youtube channel and share over social media. I will also present it at a lecture I am doing at Fairfield University.

    If you are able to attend or have any questions, please send me an email caseyberna@gmail.com .  I may be able to also do some skype interviews. I am working on that possibility.

    Wednesday, February 25, 2015

    2015 Endometriosis Events to Look Out For



     
    March is Endometriosis Awareness Month! Why is awareness so important? Endometriosis is a horrible, invasive and painful disease. Unfortunately, not many people know about endometriosis or “think endometriosis”.
    This lack of awareness is pervasive, effecting the medical community, family, friends, employers and society at large. This lack of awareness and understanding only further devastates patients that are already suffering. Doctors fail to diagnose patients in a timely manner and often use treatments that further harm the patient instead of help. Employers do not understand when patients need time off. Family and friends sometimes do not understand the disease and fail to support patients in meaningful ways. Society as a whole does not understand or take endometriosis seriously. Yet, this disease has a serious, profound impact on the life of a patient. 

    Turning your facebook page yellow may seem simple and maybe even silly, but it will help start a conversation with those you are connected with. Sharing your journey with endometriosis, or the journey of someone you love on social media or in your community, can help someone else get diagnosed, get proper treatment or feel less alone.  Participating in organized events near you helps create a larger impact. The more voices that join together the louder we can be heard. It is time to end the silence.

    Here are some ways to participate. If you have any questions, feel free to email me caseyberna@gmail.com.

    Events You Can Do From Your Living Room

    1)      Turn Facebook Yellow for Endometriosis : Really simple, for the month of march let’s have facebook turn yellow! Ask all of your family and friends to do it too.  http://www.endochallenge.com/
     
    2)   Thursday, Mar 5, 630pm EST  http://on.fb.me/1CdcZDC Let's Talk about Endometriosis! Join Dr Sinervo from the esteemed Center for Endometriosis Care in Atlanta and The Endo Challenge  Details and RSVP at link - http://on.fb.me/1CdcZDC

    3) Participate in Knock Out Endo’s powerful social media campaign by joining their facebook page and share why you pledge to Knock Out Endo… https://www.facebook.com/Knockoutendo

    4) Are you on Instagram? Follow Endometriosis Advocate EndoHappy this month and take her Awareness Month Photo Challenge!
     

    5) Advocate Ask Me About My Endo is encouraging folks to take pictures of Ruby the Endo Roo out and about to raise awareness and qualify for prizes.
     
     
    6)      Donate Money to help Endometriosis Patients or Endometriosis Non-profits. There are awesome non-profits who are campaigning this month who would appreciate your support. I am focusing on helping two specific patients in need.  An endometriosis patient and a dear friend of mine, a military spouse, has emptied her life savings to fight to keep her forever family together and is now in desperate need of excision surgery.  If a certain amount of money is raised, I get a pie in my face! Win-win! http://www.gofundme.com/pieface4family 

    In addition, a personal patient of mine is about to be homeless, is a single mother and has severe endometriosis and adenomyosis. She needs help getting on her feet again and quickly. If you are interested in helping her please email me at caseyberna@gmail.com
     
    Global Events

    1)      On March 28th, communities across theglobe will be working in conjunction with Worldwide EndoMarch to participate in awareness events. Check out their website to see what is going on in your community. EndoMarch is organizing two main events this year in Palo Alto California and Washington D.C. To register for these events and get more information at http://www.endomarch.org/  If you plan on attending the D.C. event make sure to go to the social event the night before run by some of my favorite leaders in the community: http://www.eventbrite.com/e/endosocial-2015-tickets-15783198973
     I had so much fun in D.C. last year. I made a video of the experience!
     
     
    2) Endometriosis.Org has put together an extensive list of endometriosis events happening around the globe. Go to http://endometriosis.org/news/support-awareness/endometriosis-awareness-2015/ to check it out!
     

    New York City Events

    1)      On Saturday March 7th, from 900am-3pm, I will be interviewing patients at Maria Droste Counseling Services to be put in a series of awareness videos. I will be lecturing at Fairfield University regarding the impact infertility and/or endometriosis has on mental health and I am looking for women to come and share their stories to present to the class.  I am also formulating a video called “think endometriosis” highlighting the medical mismanagement so many patients get and the devastating it effects it has.  If you can make it email me caseyberna@gmail.com

    2)      Come hear expert endometriosis excision surgeon Dr. Seckin and celebrity and women's advocate Padma Lakshmi, co-founders of the Endometriosis Foundation of America, speak about endometriosis on March 10th. http://www.92y.org/Event/Endometriosis.aspx


     

    4)      On Saturday March 28th, EndoMarch in conjunction with the EFA, are encouraging endometriosis patients and their supporters to storm the Today Show Plaza to make some noise and get some attention for this silent disease. Sign up here: http://www.chancesour.blogspot.com/2015/01/participate-in-endomarch-through-ny.html
     If you do not have anything yellow to wear to the Plaza, buy one of these cute t-shirts here and in doing so your donation will support the amazing programs the EFA leads in educating young people and supporting patients.  

     

    5)      From April 10-12 the EFA will be holding its annual Medical Conference and Patient Day.  Urge your doctors to attend the medical conference to hear the best experts come and discuss the disease. Come to the EFA’s free patient day to get invaluable resources and the latest information regarding endometriosis. Make sure to plan to come out afterwards for a drink with fellow attendees!  

    6)      Sometime in the fall I will be hosting an endometriosis retreat! If you are interested in more information and would like to be put on the mailing list, email me at caseyberna@gmail.com
    Hooray for Endometriosis Awareness! Looking forward to seeing some of you at these events and seeing all the yellow awareness spread across the globe to honor our stories and our experiences!

    Thursday, January 15, 2015

    Participate in EndoMarch through NY TODAY SHOW TV Brigade

     


    Are you super excited about promoting Endometriosis Awareness in the Tri-State Area? Did you want to participate in EndoMarch but can't make it to California or DC this year? Do you like wearing yellow and are free on March 28th?

    If you answered yes to any of these questions, then you are in luck because on Saturday March 28th endometriosis patients and their supporters are flooding the Today Show Plaza in their best yellow gear to make some noise for endometriosis awareness.

    The Details

    What: Storming the Today Show Plaza in conjunction with EndoMarch and the Endometriosis Foundation of America to raise some awareness for Endometriosis.

    Who: Anyone and everyone are welcome. We want a huge crowd in yellow to make quite an impact. The more people that sign up in advance, the better chance they might be able to do a segment about the disease and raise even more awareness.

    When: Saturday March 28th in the morning. Today recommends showing up by 6am and they film 7am through 10am.

    Where:The TODAY plaza is located in Rockefeller Center between 48th and 49th streets and 5th Ave. and the Avenue of the Americas (6th Ave.). https://www.google.com/maps/preview#!q=The+Today+Show%2C+New+York%2C+NY&data=!4m15!2m14!1m13!1s0x89c258ff308b962b%3A0x8c78f178e4a5e9d2!3m8!1m3!1d227878!2d-73.979681!3d40.697488!3m2!1i1315!2i452!4f13.1!4m2!3d40.758293!4d-73.978925

    How:
    Step One: Register here is advance: http://visit.today.com/ Put your date as March 28th. Make sure you put you are part of a large group. When it asks for more information write, "Filling the plaza with Yellow for Endometriosis Awareness. I will be coming as a part of the Global EndoMarch." Also feel free to share a brief personal story. You never know, they may ask you to be interviewed!  When choosing a picture, if you have one of you in yellow, or you post op, feel free to post it. I used this picture.


    Step Two: Ask a friend, family member or two to go with you and have them register ASAP.

    Step Three: Share on social media that you are coming.
    Facebook: Share this blog with friends and family on facebook. Invite them to join.
                      Like https://www.facebook.com/todayhealth on Facebook and message them
                             and tell them "I am coming to the TODAY show on March 28th in solidarity with     
                           EndoMarch to promote endometriosis awareness because.....Please shed light on our  
                           disease!"
    Twitter: Tweet this out if you are on twitter: Hi  get ready 4 ladies in yellow storming the plaza on 3/28 for Endometriosis Awareness   
    For more tips and information go to these Today Show Sites:
     http://www.today.com/allday/visit-today-plaza-what-you-need-know-6C10518085
    http://visit.today.com/plan-your-trip/
       When you sign up make sure to tweet me, leave a comment for me on this post or let me know on my facebook page https://www.facebook.com/CaseyBernaMSW
       
                                                              Time to end the silence ladies!
    Check out my EndoMarch Awareness videos here to get pumped:
    https://www.youtube.com/watch?v=KSc4j7KzOis
    https://www.youtube.com/watch?v=lw2DuJweCZU
    This is a Patient Video that Worldwide EndoMarch put together last year. My mom and myself are included! http://youtu.be/HewURbuVR0s
    Make sure to check out the EndoMarch Website to see all the amazing worldwide events happening.
    Need something yellow to wear? Support the incredible awareness projects of the EFA and buy one of these awesome t-shirts to wear on the plaza that day!