Westchester NASW Presentation: Social Work and Endometriosis and Infertility

I was asked to present my current work with the endometriosis and infertility communities for the Westchester National Association of Social Workers. Here is a transcript of my talk!

 

Our job as social workers is to improve the quality of life and subjective well-being of individuals, groups, and communities. We do this in many ways, primarily through research, policy, community organizing, direct practice, crisis intervention, and teaching.  We do this to benefit vulnerable populations.  Today I am going to talk about two vulnerable populations that I have been working with: the infertility community and the endometriosis community. I define the infertility population as those patients who need help conceiving, whether it due to a medical issue preventing them from conceiving on their own. I also include those who need fertility treatments or the use of a surrogate to build their family, like single persons or LGBT couples. Although  there are many patients with endometriosis who also suffer from disease related infertility, living with an often debilitating disease like endometriosis, comes with its’ own unique challenges in addition to the infertility piece.

Individual Counseling

Individual counseling is incredibly helpful for patients suffering from endometriosis and/or struggling with infertility. Like many vulnerable populations, patients struggle with feeling isolated, depressed, anxious and angry. They experience helplessness, hopelessness, panic, irritability, fear, denial and sometimes even apathy.  In both populations, you find many patients have experienced pregnancy loss and they are dealing with profound grief.  Both of these populations at different times are in crisis. Crisis is defined as “experiencing a situation of intolerable difficulty that exceeds the person’s current resources and coping mechanisms.”  (--James and Gilliland, 2001) Like other populations that are in crisis, these patients may have difficulty eating or sleeping, they withdraw from social situations and have a lack of interest in social activities.  Both populations struggle with the lack of empathy for their situations from family, friends, co-workers and the community at large, due to the lack of awareness and the misunderstanding of both infertility and endometriosis. Infertility patients deal with the uncertainty, “will I ever get to have the family I am hoping for” and the loss over the ability to conceive a child with the ease and spontaneity that most other people experience. Endometriosis patients struggle with having a chronic, painful, debilitating disease that can affect all aspects of life.

As a clinician working with patients in the endometriosis and infertility community, it is important first for the clinician to educate themselves regarding the most sensitive and compassionate attitudes to have towards the patients’ situations.  For instance, saying to a patient, “You cannot get pregnant because you still have unresolved issues towards your mother.” Or asking your patient who wants to try IVF, “Why don’t you just adopt?” is not appropriate.  Telling an endometriosis patient who is struggling with chronic pain, “You should just get a hysterectomy.” Or “My cousin has endometriosis and she is able to get to work every day, have you tried taking Tylenol?” is also not helpful.   Empathy and sensitivity always need to be the first response to the clients’ pain, suffering, and distress.

It is important for clinicians working with these populations to complete certain tasks with their clients. Clinicians need to help patients find positive social supports and networks to help them feel less isolated. It is important for clinicians to provide a safe space for patients to talk openly about their feelings and process what is happening in their lives. This could be anything from, “My last three IVF’s have failed and now my doctor wants me to use donor eggs.” To “I just had my sixth endometriosis surgery and I still do not have pain relief. I am out of sick time and have no idea what to do.”  As the clinician, you have to help your patient develop coping strategies for the present time and life strategies so they will have the tools to be able to handle the ramifications of their situations independently in the future. If the patient has history of mental illness, substance abuse or an eating disorder, an outside referral may be necessary to give patients extra professional support when needed. Infertility and endometriosis can have a dramatic impact on the relationships in a patient's life.  Couples counseling or family counseling can be a helpful tool to further support a patient.

Endometriosis patients are often dealing with acute or long-term situations. Clinicians must be aware that the effects of endometriosis are devastating. Patients deal with symptoms such as chronic fatigue, chronic pain, painful intercourse, terrible digestive and urinary complications, and infertility. There is no cure and the only real treatment is excision surgery. But there are no excision surgeons who currently take health insurance and patients often have to undergo multiple surgeries, even with the best care. It takes on average ten years for a patient to get diagnosed. Patients spend many years being told by multiple doctors that there is nothing wrong with them.  The grief in an endometriosis patients stems from the loss of having a “normal”, healthy life due to living with a chronic illness. It is crucial for the clinician to be aware of the disease and its’ ramifications so that he or she can support the patient through active and empathetic listening.

Group Therapy

I currently run two support groups out of Westchester Fertility.  RESOLVE is the national infertility association of America.  I run a RESOLVE approved, professionally led, support group for women who are struggling with infertility.  Again, infertility makes patients feel very isolated. In many cases, patients have no one else in their life to talk to who will understand exactly what they are going through. This group provides much needed support to infertility patients.  It will give them coping skills to navigate infertility and also help them feel connected and empowered.  There are endless possibilities for group work from working with patients who are adopting after infertility, pregnancy loss, couples who are using third party donations for their family building, a support group for men, patients struggling with secondary infertility ect…

I am also the Westchester Affiliate for an up and coming non-profit Endowarriors. The main goal of Endowarriors is the provide support and community to women living with endometriosis. The group serves as a place to talk about the struggles of living with endometriosis. We talk about anything from nutrition to the benefits of egg freezing as a means to preserve infertility.  I also bring in speakers that can help enrich the lives of those living with endometriosis. We have had an acupuncturist come and we are going to have a sex therapist come and speak.

Non-Profit Work

I work with three different non-profits in the infertility and endometriosis field. I talked a little bit about my work with Endowarriors. I will talk a little more about RESOLVE, the national infertility association, as I go into advocacy work.  I will focus this section on my work with the Endometriosis Foundation of America.

Endometriosis Foundation of America is a non-profit started by one of the top endometriosis excision surgeons in the world, Dr. Tamer Seckin and television personality, Padma Lakshmi. They have a very small staff and their big event is The Blossom Ball, which is a big black tie event in NYC. They also hold a medical conference during endometriosis awareness month to gather together the top doctors who are treating and researching endometriosis. Tonight I am going to talk about a fairly new program they have developed, called the ENPOWR Program. I was just named an EFA Embassador and am taking this program into Westchester schools. Part of the problem with endometriosis is that it takes ten years to diagnose. Early diagnosis and treatment is crucial to improving a patient’s quality of life. The ENPOWR program’s goal is to educate high school students about endometriosis in hopes that they will not have to suffer for years without a diagnosis and hopefully can get early intervention. 

Advocacy

On my business card I have that I am an infertility and endometriosis patient and advocate. I have been trying to think about, “What makes me an advocate?”  I think individual counseling and group work is a great support to the struggling patient. I think non-profits have a great role in providing resources to whole communities of patients on a more organized and grander scale.

But what do I do with my anger and sense of injustice regarding the suffering of these vulnerable populations? This is where advocacy comes in.  I sometimes lay awake at night worrying about the fact that the doctor referrals that I give my endometriosis patients do not take insurance and they cannot pay for the care they need. I worry about the kids I reach out to in schools. Yes I may help them understand what is wrong with them, but they do not have access to affordable treatment. I lay awake at night worrying about the 1 in 10 women who have endometriosis who live in poverty and do not even have access to ibuprofen or heating pads, never mind a proper surgeon to help them with their pain. I worry about how the treatment and knowledge of endometriosis hasn’t changed much in the past thirty years, and if more research and awareness regarding this disease does not happen, things may not change that much in the next thirty years.

As social workers, when we see that the system is not working, we have to work to change the system. When I look at endometriosis and infertility I see gaps and insufficiency in health care. I see moral and religious beliefs of politicians blocking patient access to needed services like IVF, embryo donation, surrogates and egg donation in some states. I see insurance companies failing to acknowledge that infertility is a medical condition which treatment can help, thus denying coverage for needed services.  As clinicians we need to think about advocating for clients on both the micro and macro levels and strive to influence policy change at a local, state and federal level.  

RESOLVE Advocacy Day: Last year I went to Washington DC to talk to my state congressional representatives about getting their support to pass bills that would directly support infertility patients.

In May 2013 a bill to create a tax credit for the out-of-pocket costs associated with IVF and fertility preservation was introduced in the U.S. Senate by Senator Kirsten Gillibrand (D-NY) and in the U.S. House of Representatives by Congressman John Lewis (D-GA). The Family Act of 2013, (S 881/HR 1851) will help thousands of people access medical treatment for infertility that otherwise would be out of reach for them due to lack of insurance coverage.

On January 24, 2013, U.S. Senator Patty Murray (D-WA) introduced the Women Veterans and Other Health Care Improvement Act S 131.  The bill will improve the reproductive assistance provided by the Department of Veterans Affairs to severely wounded, ill, or injured veterans and their spouses. It will also require the VA to provide adoption assistance and child care to veterans. On March 5, 2013, U.S. Representative Rick Larsen (D-WA) introduced the same bill in the House of Representatives (HR 958).

Million Women March for Endometriosis: A month from now I will be going to Washington to march in the million woman march for endometriosis. I have been working hard to help organize this event. The main goals of the march are to Empower, Educated and Effect Change. For the first time ever, women from all over the country are coming to DC to stand united and let their voices be heard. Also, in 52 other cities around the world, women are having events for endometriosis awareness.

In closing, social workers are uniquely awesome and uniquely in a position to effect change on both an individual level and a systemic level. It is exciting to be a part of a new field because I feel free to help in whatever way I can. One day I am a clinician, maybe the next I am a community organizer or an educator. The next day I am a booming voice for a patient in need or a population in need. It is an honor to be advocating for such determined, strong communities and I am grateful to be a part of it.

If you have any questions for Casey, please feel free to contact her at (914)629-8870 or at CaseyBerna@gmail.com

References:

James, K. J., & Gilliland, B. E. (2001) Crisis Intervention Strategies. Pacific Grove, PA: Brook/Cole.