Living with endometriosis is taxing on us emotionally. Endometriosis symptoms can leave us physically and emotionally exhausted – dealing with the unpredictable nature of our flares and not knowing how we are going to feel from one minute to the next, the medical trauma and gaslighting, the dismissal and lack of support from people around us, the agony of the physical symptoms and what we have to endure on a daily basis, the fear of that PAIN, the grief of all that we’ve lost to this illness, financial concerns for our high medical bills or inability to work, social isolation from being unable to leave the house due to pain, feelings like a burden/bother (which we aren’t at all!) as we need to become increasingly dependent on others for help.
Additionally, people who hold identities that have been historically marginalized can face further trauma. This can come in various forms, such as implicit and explicit biases that medical professionals may hold towards people in terms of race, ethnicity, gender identity and expression, and sexual orientation. It is also important to note that the space of endometriosis advocacy, as well as the treatment space, is predominantly occupied by people who are cisgender women, heterosexual, and white. People with different identities – such as Black, Indigenous, Latine, Asian, people of color, LGBTQIA2S+, including Intersex people, non-binary and others under the Trans umbrella, as well as various other identities – can face a lack of inclusion, representation, or even outright discrimination.
Some research has shown that living with chronic pain takes a similar emotional toll as a cancer diagnosis. This shows the seriousness of living with the daily onslaught of symptoms/pain that endometriosis can bring. That’s why it’s vital to take care of our mental and emotional health, because living with endometriosis can sink us into a deep sadness, trap us in anger, or completely strip our lives of meaning. All of these are natural reactions to a devastating disease, but it’s important to address how we feel and then work through our feelings so we don’t get stuck in them. I was stuck in my anger for over a decade so I know it’s not an easy process. But trying to move towards finding peace (whatever that means to us), finding healthy outlets for our feelings, and working safely through trauma can help us to once more access joy, meaning, and happiness in our lives where we thought there was none.
I truly believe that when we get diagnosed, part of the medical care that is provided should automatically include addressing the toll this disease takes on our mental health. Unfortunately, the medical community is barely capable of treating the physical side of endometriosis, never mind how it affects us mentally and emotionally. Which means this burden typically falls on us to figure out how to support our own mental health in addition to all the physical symptoms and treatment options we are dealing with. Not to mention, access to mental health resources can be costly and inaccessible, and it has great disparities in quality between communities.
In summary – Endometriosis can greatly affect mental health, and taking care of our mental health can be difficult. If you are struggling right now, I see you. Please don’t judge yourself. It’s okay to reach out to a loved one, mental health professional, online mental health community/resources or hotline for support.
Some potential ways to support mental health
As we are all individuals, what we need or what can help us will vary. There are many ways to address our mental health and often the best results come from supporting ourselves in multiple ways emotionally, mentally, and spiritually.
Some people may find it helpful to see a mental health professional, do cognitive behavioral therapy (CBT) or dialectical behavioral therapy (DBT) with a mental health professional or via workbooks/self-learning, do EMDR, take prescription medication, etc.
Finding community on or offline, talking to a trusted loved one, sharing your story or hearing others share theirs.
Finding joy, meaning, purpose, or fulfillment; self care activities like setting boundaries, learning to say no, resting when we need to; finding activities that put us into a flow state like gardening, dancing, singing, making art; moving our bodies with walking, yoga, qigong, etc; getting into nature; journaling; releasing activities like screaming into a pillow, crying; pain and symptom management; and more.
My own experience
I was reticent to address my mental health for a few reasons.
- First, I didn’t realize the trauma I was carrying from the years of medical gaslighting or the impact it was having on my daily life.
- Second, I didn’t think my anxiety/depression was worth addressing because after been dismissed and gaslit for a decade that I was absolutely convinced that I was broken and inherently flawed (and that was the reason why I was sick). I was sure that nothing could help me so I didn’t even realize that working on my mental health was an option. I had no idea that with the right support and tools, I could see improvements in my emotional state and also the way I felt about myself.
- Third, like most of us with endometriosis, I’d also been brushed off and told so many times that it was “all in my head” and due to “anxiety” (instead of the doctor actually addressing my endometriosis), so I was concerned that if I did work on my worries, fears, and anxieties, that would somehow negate the physical and mean that my symptoms actually were “all in my head.” But looking at our mental health doesn’t mean that endometriosis is in our heads, because it’s not at all. Endometriosis is a physical disease with lesions in our bodies that shouldn’t be there that are wreaking havoc! In taking a full body approach to addressing this disease, we need to look beyond the physical and also at the emotional and mental toll it takes on us.
For More Resources
- Impact of Living with Endometriosis on Mental Health – Article by Anindita Kundu, a trauma psychotherapist living with endometriosis
- Endometriosis + Mental Health – From the Endometriosis Network Canada
- The Importance of Mental Health Support in Endometriosis – Article by by Deanna Denman, PhD, Licensed Psychologist, Clinical Health Psychologist
- Medical Trauma, Gaslighting, and Endometriosis with Casey Berna MSW and Dr Sallie Sarrel PT ATC DPT – Video from the Endometriosis Summit
- Endometriosis and Race – Video from the Endometriosis Summit
- Endo Community – A list of resources for people looking for endometriosis communities to connect with
- Endometriosis and How to improve communication with oneself – From the Endometriosis Network Canada
- How to Make Every Appointment a Safe Space – From the Endometriosis Network Canada
- Decolonizing mental health: The importance of an oppression-focused mental health system – Excellent article
- Decolonizing Mental Health – This video series “dismantles the racism that underscores the mental healthcare industry. By focusing its gaze on the transformative work of therapists and individuals of color, it calls for a redressal of the ways in which we define psychiatric illness and health. Through 20 profiles, the digital series discusses what a more responsive mental health care system should look like.”
Research on the Endometriosis Experience
Note: These studies use gendered language, and I believe were done on cis-women. I haven’t come across many studies of the lived experience of people with endometriosis describing their relationship to their pain, disease, and symptoms. If you know of any more, especially ones using inclusive language, please send them to me!
- ‘Sitting on the side-lines of my own life’: Interrupted living and endometriosis: A Qualitative Study – Interesting study which shows how endometriosis impacts all aspects of the patient’s life.
- Parallel worlds and personified pain: A mixed-methods analysis of pain metaphor use by women with endometriosis – Metaphors and pain descriptions to describe endo.
- The Subjective Experience of Dyspareunia in Women with Endometriosis: A Systematic Review with Narrative Synthesis of Qualitative Research – on painful sex.
- “My body is out to wreck everything I have”: A qualitative study of how women with endometriosis feel about their bodies
- The Effect of Invalidation – Allyson C. Bontempo, MA, Ph.D. Candidate in Health Communication, Rutgers University.
- Study on the “Impact of endometriosis on women’s lives”
Some Great Books
- Finding Peace with a Devastating Disease by Amy Corfeli (I wrote this book!)
- Man’s Search for Meaning by Viktor E. Frankl
- The Choice: Embrace the Impossible by Edith Eger
- The Gift: 12 Lessons to Save Your Life by Edith Eger
- The Dialectical Behavioral Therapy Skills Workbook for Anxiety by Alexander L. Chapman
- The Dialectical Behavioral Therapy Skills Workbook: Practical DBT Exercises for Learning Mindfulness, Interpersonal Effectiveness, Emotional Regulation, and Distress Tolerance by Matthew McKay, Jeffrey C. Wood, Jeffrey Brantley
- The PTSD Workbook for Teens by Libbi Palmer
- A Guide to the Good Life: The Ancient Art of Stoic Joy by William B. Irvine
- Healing into Life and Death by Stephen Levine
- The Four Agreements: A Practical Guide to Personal Freedom (A Toltec Wisdom Book) by Don Miguel Ruiz
- The Happiness Hypothesis: Finding Modern Truth in Ancient Wisdom by Jonathan Haidt
- The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk
Related Podcast Episodes
- Ep 17 – Setting Boundaries to Protect Your Health and Self-Care
- Ep 29 – What Do You Believe about Your Illness and Yourself?
- Ep 34 – The Strength Inside of Us
- Ep 40 – The Silver Linings Endometriosis Brought Me
- Ep 44 – It’s Not in Your Head – Medicine’s Sex and Gender Bias. Part 1
- Ep 45 – Racial Bias in Healthcare
- Ep 48 – Why Is Pain Dismissed in People Assigned Female at Birth?
- Ep 50 – But Doctor, It’s Not Psychosomatic!
- Ep 53 – You Are Not A Burden
- Ep 63 – Endometriosis and Relationships
- Ep 64 – Talking about Gender and Inclusivity with Lori Johansson
- Ep 72 – The Importance of Inclusivity in the Endo Community – Interview with Bee Lynn
- Ep 73 – Is Happiness Possible with Endometriosis?
- Ep 77 – Finding Meaning
- Ep 88 – It’s Okay If All You Did Today Was Survive
- Medical Gaslighting (coming soon)
- You are Not Broken (coming soon)
- Reframing Common Beliefs about Illness (coming soon)