Being diagnosed with a chronic disease feels like a loss. I know what it’s like to have one. When I was diagnosed with endometriosis, I couldn’t stop thinking about what this meant for my future. Many women like me require repeat surgeries, which can be painful and overwhelming resulting in considerable deterioration in the quality of life.
Endometriosis affects an estimated 1 in 10 women during their reproductive years and has been associated with an increased rate of anxiety and depression. Symptoms of endometriosis vary and include nausea, painful cysts, heavy periods, and fatigue. In addition to pain, endometriosis is also associated with infertility which in turn can cause significant anxiety and severe psychological distress to women and couples who want to create their own families. Infertility comes with a wide range of consequences, including social stigma, discrimination, relationship difficulties, fear, self-blame, and shame which can make women feel broken or worthless. That said, it is paramount to acknowledge that endometriosis has an impact on multiple aspects of women’s lives.
So how can endometriosis be a part of our new identity?
Women who deal with endometriosis would be doing so for the rest of their lives and that is a hard realization that requires inner strength and resilience. After having a diagnosis of a chronic illness, the emotional responses include several stages of grief. Similar to losing a loved one, women with endometriosis grieve parts of their old selves and bodies that will never be the same. Women experience all stages of grief, such as denial, anger, bargaining, depression, and acceptance. People are telling you “Don’t worry’’, but honestly, it is very painful to accept the new reality, re-learn your body and move forward.
Endometriosis can cause significant stress and feelings of powerlessness. Finding what we need to feel safe and courageous is essential while dealing with the symptoms.
Psychotherapy is a valuable resource when we are facing a diagnosis for a chronic illness. Therapy could help women who cope with endometriosis to work and accept difficult moments and emotions including fear, worry, and isolation. Counselling with self-care focus contributes greatly to the treatment of chronic diseases. Self-care– based counselling helps the patients to improve quality of life and increase life satisfaction.
In therapy women who struggle with endometriosis can learn important life skills, healthy coping mechanisms and understanding their needs, and respecting their bodies’ boundaries. Mindfulness-based stress reduction (MBSR) could help patients cope with endometriosis, by learning to be conscious of the present moment in a non-judgemental way and focusing on accepting and embracing overwhelming emotions with kindness and compassion.
Suffering in silence won’t help to process your loss and personal wounds. It’s important to be open about the challenges we all face. Talking things through with someone will allow you to understand that a diagnosis of chronic disease has a place in your life without dominating it.
If you are facing the same diagnosis, I hope you understand that you are not alone. I hope you take the time for yourself to rest your body and focus on your own needs and most importantly that you understand that you deserve the love and affection of yourself.
World Health Organization (WHO). International Classification of Diseases, 11th Revision (ICD-11) Geneva: WHO 2018.
Rush, G., & Misajon, R. (2018). Examining subjective wellbeing and health-related quality of life in women with endometriosis. Health Care for Women International, 39(3), 303–321. https://doi.org/10.1080/07399332.2017.1397671
Farshi, N., Hasanpour, S., Mirghafourvand, M., & Esmaeilpour, K. (2020). Effect of self-care counselling on depression and anxiety in women with endometriosis: a randomized controlled trial. BMC Psychiatry, 20(1), 1–12. https://doi.org/10.1186/s12888-020-02795-7
Valia Tseliou is a Registered Psychotherapist (Qualifying) with College of Registered Psychotherapists of Ontario. One of Valia’s areas of specialization includes chronic illness. Valia uses evidence-based modalities and an integrative approach in order to help her clients receive treatment that is personalized to their unique needs.