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Letting Go of Self-Blame
It’s not your fault
While we still don’t know what causes endometriosis, one thing is certain – you didn’t cause your illness and it’s not your fault.
- You’re not sick because you eat X or don’t do enough Y. You’re not sick because you didn’t take “good enough” care of yourself.
- You’re not sick because you are being punished for being a “bad person”.
- You’re not sick because of your childhood trauma, because you don’t love yourself enough, or because you “rejected your womb” (not my words – these are claims from some people on the internet).
- You’re not sick because it’s all in your head or psychosomatic.
You’re sick because you have an incurable disease called endometriosis. It took me a long time to realize that it’s not my fault I’m sick – I don’t need to judge how I take care of myself, and having endometriosis is not some moral reflection about my character. Unfortunately, with diseases like endometriosis that are poorly understood and receive little funding, there’s an abundance of false claims on the internet from misinformed, and sometimes even well-meaning, people on the supposed causes and cures (endometriosis has no cure) for endometriosis.
Healthism and nutritionism
It doesn’t help either that our society is seeped in healthism, which is the idea that health is entirely a person’s responsibility, and therefore a reflection of their efforts or morals. This belief, and especially its offshoot “nutritionism”, puts a lot of emphasis on the “choices” people make, without accounting for the fact that options are shaped and limited by countless aspects that are out of the person’s sphere of control, such as: access, privilege, luck, poverty, systems of oppression, inequities, time, cultural traditions, etc.
For example, due to food insecurity, someone’s only option may be to eat what’s available to them. While someone with more privilege – who actually has money and access – may have multiple supermarkets and options to truly choose from. Someone who works two full time jobs or has young kids may not have the time to exercise daily or get adequate sleep nightly.
Wellness culture is often ignorant of, or has a blatant disregard for, how much of a role Social Determinants of Health play. Yet the WHO says research shows that the social determinants can be more important than health care or lifestyle choices in influencing health.
“The social determinants of health (SDH) are the non-medical factors that influence health outcomes. They are the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life. These forces and systems include economic policies and systems, development agendas, social norms, social policies and political systems. The SDH have an important influence on health inequities – the unfair and avoidable differences in health status seen within and between countries. In countries at all levels of income, health and illness follow a social gradient: the lower the socioeconomic position, the worse the health.” [Source: The WHO website.]
Healthism and nutritionism can lead to a lot of judgement and blaming, looking down on people, fatphobia and discrimination, disordered eating or obsessive health behaviors, and more. Instead of addressing inequities worldwide which can play a huge role in health, wellness culture conveniently ignores those. It says that if we just all made the “right” choices, we’d be healthy! If we just lived “better”, lived perfectly, then we’d have no health problems ever. But that’s just utter bs! Instead of supporting the chronically ill, wellness culture wrongly says that we should blame them because health is seen as an accumulation of our individual choices.
Wellness culture and self-blame
I do think diet and lifestyle is a powerful tool that can give us back some (not all) agency and control over our health. For many, finding the individualized habits that work for us can improve our quality of life to some degree. But it’s easy to internalize the toxic, ableist messages of wellness culture and slip into unnecessary restrictions, orthorexia, self blame, obsession, eating disorders, feelings of shame, etc.
Wellness culture makes us feel like we have to be constantly striving, doing, dieting, spending, etc, in order to achieve wellness. That if we aren’t devoting every second to their rigid version of “healthy” living, then we are failing and deserve to be sick. Wellness culture brainwashed me to believe that my symptoms stemmed from me not trying hard enough, and that if I just lived the “right” way, it would heal me. For example, on days when I struggled to keep any food down due to nausea, or I couldn’t even get out of bed due to pain (let alone exercise), I felt ashamed and inadequate. I was convinced that I wasn’t doing enough to help myself – when in reality, filling my tummy with whatever I could keep down, as well as resting, was what I actually needed that day.
For years, I was really obsessive with my health and super rigid with my routines and choices, with self-blame and judgement at the forefront. The more I successfully managed my symptoms with diet and lifestyle, the more controlling I became around my food and habits. While at first it felt empowering, it changed into guilt and self-blame: that I wasn’t trying hard enough, that I shouldn’t have eaten X, etc. It took me a long time to let go of those beliefs.
Today, I’m still pretty strict about what I do as my symptoms are severe and very strongly linked to my way of eating and living, but my approach is now one of loving and understanding, without self-blame, fear, or guilt – which has done wonders for my mental health. I do my best, knowing that my best is different from another person’s best, and that my best will be different from day to day, because taking care of myself in the specific ways that work for me often involves time, energy, effort, money, access, etc, that sometimes I just don’t have. My best has also changed over the years, as I gain knowledge and experience with my individual body. I understand there is no “perfect”. In fact, there’s not even a “right” and “wrong” way for myself: sometimes I do everything “right” and I still flare. Why? Because I have endometriosis and several other health conditions.
Let’s not judge others for their diet or lifestyle – or ourselves. We are all doing our best and what our diet and lifestyle looks like can depend on access, privilege, personal preference, finances, feasibility, responsibilities and priorities, time, energy, and more.
We often see misleading messages from coaches that we can heal our endometriosis if we change our lifestyle and way of eating. But endometriosis has no cure. When confronted, some coaches get around these semantics by saying that their definition of “healing” doesn’t mean you no longer have endometriosis, but rather that endometriosis doesn’t bother you anymore. However, managing symptoms or even becoming asymptomatic is not the same is healing from a disease.
While some of us may be able to improve or manage our symptoms through diet and lifestyle, others won’t have such great results. This isn’t because we aren’t doing it right, or aren’t trying hard enough, or are failing, but because endometriosis is a complex, challenging, incurable disease that needs a multidisciplinary approach with excision surgery as the cornerstone for a person to see the most relief in their symptoms and best improvements to their quality of life.
There are all kinds of statements out there blaming us for our illnesses or state of health, and it’s easy to internalize those messages. So I just want to tell you right now that it’s not your fault that you have endometriosis. It has never been your fault, and it will never be your fault. There is nothing that you could or could not do to have or not have this disease. You’re not sick because you eat X or don’t do enough Y. You’re sick because you have an incurable disease called endometriosis.
It’s important to know that:
- Endometriosis can still progress even if we are pain free. Progression can mean endometriosis is invading deeper into the tissue, causing more adhesions, causing organs to fuse together, etc.
- Pain going away doesn’t make our endometriosis lesions go away. This distinction is crucial.
- The only proven way to remove endometriosis from the body tip to root is excision surgery.
- Diet and lifestyle changes may help some people manage their pain, digestive disturbances, fatigue, or other symptoms. Some people can find full symptom relief. Others find none.
- There is no specific endometriosis diet or way to eat or live to heal your disease or manage your symptoms. It’s individual to each person.