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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 fear when new symptoms arise and wondering if this is our new normal.
- 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.
- never getting a break from the agony in our bodies and having symptoms every single second – some of which are uncomfortable, others are outright terrifying.
- the grief of all that we’ve lost to this illness and not being where we want to be in life.
- financial concerns for our high medical bills.
- not being able to access treatment that we desperately need.
- inability to work or a lack of accommodations/PTO if we do.
- social isolation from being unable to leave the house due to pain.
- feeling like a burden/bother (which we aren’t at all!) as we need to become increasingly dependent on others for help.
- the impact on our relationships – everything from canceling plans, to lack of intimacy, to a loved one becoming our caretaker.
- wellness culture and ableism falsely blaming us for being sick, making us feel like if only we just “tried harder” we would be better (not true).
- the burnout from the medical administration and keeping track of doctors appointments and records across multiple specialties.
- the changes to our body’s appearance, abilities, and functions.
- and so much more…the list could go on and on.
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, disability, socioeconomic status, 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 people; Indigenous peoples; Latino/a/e/x; Asian people; people of color; racialized people; LGBTQIA2S+, including intersex people, non-binary people, and trans people; as well as various other identities – can face a lack of inclusion, representation, or even outright discrimination.
Options for managing our symptoms can affect our mental health.
Many of us take hormones like birth control pills, depo provera, Mirena IUD or GnRh drugs to try and manage our symptoms. (Reminder – hormones don’t treat the disease itself, but rather may help some people with symptom management). Unfortunately, for some of us, taking hormones can affect our mood, make us irritable, or contribute to anxiety and/or depression. Orilissa, which is a GnRh antagonist for managing endometriosis associated pain, lists anxiety, depression, and mood changes under the information on the most common side effects on their website. It also says that “ORILISSA can cause serious side effects including: Suicidal thoughts, actions, or behavior, and worsening of mood.” Myfembree is a similar drug to Orilissa and lists these same side effects.
Dietary or other lifestyle changes can also take a serious toll, and can lead to obsession, disordered eating, controlling behaviors, shame and guilt, and more. (More on that on my Nutrition page.) It can take time to find a balance and figure out how to follow any diet and lifestyle changes we’ve made in a way that supports both our physical and mental health.
In my own case, I’ve adopted what would be considered a “restrictive diet” in order to manage my endometriosis symptoms. Cutting out gluten, dairy, added sugar, and other foods, and adhering to that often means I can’t eat the food around me at friend’s houses or work break rooms and that I have to home cook most of my food. There are times when my feelings of anger and sadness around my way of eating negatively impact my mental health, but at the same time, being so intentional about my food choices reduces flares and gives me a better quality of life, which allows me to hold a job and support myself. So for me, having constant symptoms/ flares takes a bigger toll on my mental health than feeling deprived by my way of eating. So I typically don’t stray from my way of eating, and instead look for ways to cope with the feelings that limiting my food choices brings me. It’s taken me a long time, but I’m finally (typically, on most days) at peace with my way of eating, but that wasn’t always the case. Episodes 65 and 66 on my podcast are about how I cope and my relationship with food.
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.
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.
Many people find it helpful to see a mental health professional. There’s different types of therapy such as cognitive behavioral therapy (CBT), dialectical behavioral therapy (DBT), EMDR, parts work, and others. It can be difficult to access a mental health professional that is affordable, trauma informed, understands chronic illness, etc, so I want to acknowledge that it’s not as simple as “see a mental health professional”. However, when a person does find a professional who is a good fit, it can be life-changing in helping them work through trauma, identify and change distorted thought patterns, etc. Some of us may also need medications for our mental health, which we would access through a professional.
Finding community on or offline, talking to a trusted loved one, sharing your story or hearing others share theirs.
There’s also free resources available in the form of workbooks or online worksheets to work towards acceptance, better coping mechanisms, recognize distorted thought patterns, etc. These are not a replacement for a mental health professional nor should be used as a substitute for treating a mental health diagnosis, but depending on the workbook/worksheet and the person, these may be helpful for some people for general support.
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
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. But I was reticent to address my mental health for a few reasons.
First, I didn’t realize the trauma I was carrying.
Years of it – from childhood, from my symptoms and the fear I had developed of everything from food to sex to a bowel movement, from medical gaslighting, from the lack of understanding and support for sick and disabled people from society at large and even from loved ones. I had no idea how much trauma I held and was living from, or the impact it was having on my daily life. Unpacking my trauma in a safe way has been such a gift to myself, because it’s allowed me to get out of flight-or-flight and calm my wound up nervous system which had been in a heightened state of alert of decades without me even realizing! This has been a missing puzzle piece to some of my bowel, bladder, and pain symptoms.
I also didn’t realize how many stories I told myself regarding my illness: about how I deserve to be sick, about how I’m a burden, about how I’m unlovable, about how it’s my fault I’m sick. Objectively examining and changing the stories I tell myself, my distorted thought patterns, and my self-worth has greatly improved my experience of living with chronic illness.
Second, I didn’t think my anxiety/depression was worth addressing.
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. I had no idea that there were better ways to cope, or that meaning and joy could be accessible to me.
Third, I’d been brushed off and told so many times that it was “all in my head” and due to “anxiety”.
After being told it’s psychosomatic for 16 years, (instead of the doctor actually addressing my endometriosis), 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 addressing 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! It’s not our fault we have endometriosis. Evidence is pointing to us being born with it, and our mental health has nothing to do with us having or not having endometriosis. Endometriosis is not caused by trauma, even though some people incorrectly circulate that information after poorly interpreting some studies on trauma.
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 only done on cis-women. I haven’t come across many studies on 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
- Ep 96 – The Psychological Toll of Medical Gaslighting
- Ep 101 – You are Not Broken
- Reframing Common Beliefs about Illness (coming soon)