Endometriosis is a chronic, painful disease that has a profound impact on every aspect of a woman’s life. Sometimes a woman can suffer with symptoms for more than half her life, depending on when she starts to menstruate and when she goes into menopause. That is a long time to be in pain and ultimately it can alter a patient’s emotional well-being. Adding a mental health provider who understands the disease can have a positive impact on your overall care. When your life revolves around a chronic illness such as endometriosis, there exists a loss of health and quality of life that you have to cope with. Endometriosis patients deal with grief on a daily basis.
Dr. Elisabeth Kübler-Ross (July 8, 1926 – August 24, 2004) was a Swiss-born psychiatrist who first discussed the Stages of Grief as a pattern of adjustment that is now known as the Kübler-Ross model. In her book, On Death and Dying, she proposed that the five Stages of Grief are denial, anger, bargaining, depression, and acceptance. As an endometriosis patient myself, who has often turned to a mental health professional for support, I find that these stages of grief can also be applied to endometriosis patients. What Dr. Elisabeth Kübler-Ross states for dying patients is also true for those of us facing endometriosis; “individuals experience most of these stages, though in no defined sequence, after being faced with the(ir) reality.” Below I explore how the Stages of Grief can be applied to endometriosis patients in order to illuminate the complexities of how an endometriosis patient can be feeling on any given day.
Merriam-Webster defines denial as a “psychological condition in which someone will not admit that something sad, painful, etc., is true or real.” For a patient, denying that endometriosis is a serious disease that can impact a person’s daily life is sometimes easy to do when our society as a whole is completely in denial regarding the gravity of endometriosis. Sometimes our families, co-workers and friends belittle endometriosis due to their own ignorance about the disease. Our own gynecologists and other doctors are also in denial as to the gravity of the disease or sometimes even the existence of the disease! As patients we want to believe them. We wish that our pain was manageable and that our bodies were not failing us. As our symptoms get worse, we take more pain medications and keep going, not wanting to face the reality of yet another surgery. We try to ignore the disease. We don’t want to believe that this disease can have lasting impact on not only our fertility, but our urinary, digestive and sometimes even our respiratory symptoms. We deny until our symptoms finally make us feel scared or completely broken.
Endometriosis is one of THE most frustrating diseases out there, and there are many legitimate reasons for patients to be angry. For myself, I know anger comes and goes. It takes a lot of energy to be angry, and energy is not something many endometriosis patients have a lot of. There are systemic reasons to be angry: “Why aren’t there any excision specialists in my area? Why won’t anyone take my disease seriously? How come no one has heard of my disease? Why isn’t there a cure? Why is no one talking about this disease?” There are also very personal reasons to be angry, ranging from the frustrating to the profound: “Why didn’t my first gynecologist properly treat and diagnose me a decade ago? Why can’t I JUST have sex with my partner without negative repercussions? Why can’t I go out when I want/eat what I want/exercise like I want? Why can’t I take care of my kids like they need? Why can’t I keep a job? Why do I need to have surgery all the time? Why can’t I leave my bed?” And for many women with endometriosis, one of the greatest losses to be angry about, “Why can’t I ever get pregnant or carry a baby to term?”
When trying to bargain with a disease like endometriosis, I feel like we are trying to bargain with the devil. Patients are constantly trying to bargain with this disease to no avail. We bargain for health, energy, and the ability to go places and do things. We bargain for fertility and the chance to have babies. If I eat right, exercise, try herbs, get rest, drink water, cut out caffeine, go to acupuncture, yoga, or physical therapy, stop drinking alcohol, take all of my vitamins, and take awful prescribed drugs, maybe I will be okay? If I do all of these things, maybe the disease won’t spread and maybe I won’t have to have another surgery? We bend ourselves backwards and alter our lifestyles for the small hope that we can control the endometriosis, keep it at bay, beat it into submission. Although all of these tips may help daily symptoms and improve a patient’s quality of life, endometriosis is an insidious disease that for the most part cannot be bargained with.
Many women battling endometriosis are also battling clinical depression. Many of the symptoms of endometriosis are eerily similar to symptoms of depression. The Mayo Clinic states the following symptoms as warning signs for clinical depression: Irritability or frustration, even over small matters. Loss of interest or pleasure in normal activities. Reduced sex drive. Insomnia or excessive sleeping. Changes in appetite. Slowed thinking, speaking or body movements. Indecisiveness, distractibility and decreased concentration. Fatigue, tiredness and loss of energy — even small tasks may seem to require a lot of effort. Feelings of worthlessness or guilt. Trouble thinking, concentrating, making decisions and remembering things. Frequent thoughts of death, dying or suicide. Crying spells for no apparent reason. There are physical limitations and exasperations that come with being in chronic pain and living with endometriosis, like slowed thinking, irritability and fatigue, which also mimic clinical depression. There is also a natural sadness, fear and uncertainty when coming to terms with having an incurable, chronic disease and all of the lifestyle implications that follow. Feeling all of these emotions and more are so important. It is vital for endometriosis patients to seek out support through mental health counseling, especially if there are thoughts about suicide or overwhelming hopelessness.
Acceptance is a general feeling that although things are bad they are going to be okay. Acceptance is also the idea of embracing the disease instead of resisting it. This idea seemed foreign to me at first. We are always talking about how we are Endwarriors and how we will fight the disease with everything we have. The problem with fighting or resisting the disease is that it is exhausting. My own therapist recently said to me, “Surgery is like food and water to you. You need it to not only survive but thrive, so why not embrace it instead of fighting the need for it.” I am learning I have to choose my battles.
When I have the energy I will fight for endometriosis awareness. I will fight to educate those around me, my family, doctors, and others in the general community about endometriosis. I will fight for women who do not have access to good, quality care. I will fight for a cure. These are all positive outlets for my anger and helplessness. But I am through fighting with my endometriosis because I will not win. It exists in my body and I will accept that I cannot change it. The harsh reality is that with the exception of having an excellent and knowledgeable excision specialist, there is little more I can do. I will embrace my next surgery with because as hard as surgery is, it will help me. I will embrace my endodiet when I can because I know it will help to ease my symptoms. I will try and face this disease with courage, dignity and grace and survive it to thrive.
Many people feel that endometriosis is only a physical illness and they don’t recognize the emotional toll that a disease like this takes on a patient. Mental health is just as important as physical health, and patients are encouraged to seek the support of a mental health counselor to help cope with this disease. Dr. Elisabeth Kübler-Ross documented the Five Stages of Grief many years ago when having conversations with patients who were dying. As endometriosis patients, although we are not dying, we have many limitations to our quality of life. It is no wonder that we too feel grief when facing the daily challenges endometriosis poses. These Stages of Grief can help us all understand our emotions as we strive to accept our disease and seek out the proper surgical treatment that will help us.