Resilience looks different to everybody. For me, it is keeping myself turned towards the warmth of the sun by smiling, being positive, and staying colourful, cool, calm and collected. It is in complete contrast to how my insides usually feel where my mind and body scream for attention. I struggle to manage the levels of pain I am in on a minute-to-minute basis – mentally, physically, emotionally, culturally and spiritually. Sometimes it feels almost impossible to live in this body or of this world, but I am still here trying my best to do that in a way that helps educate, inform and entertain people.
I am sure some of you are feeling like, “Gurrl, I can so relate to all of it” whilst others may still be wondering how so much can exist in one person?
This is the beauty and the suffering of all people who identify as women, and in particular, those that are ‘othered’ for the colour of our skin, where we come from or for whom we choose to love or gender ourselves. Resilience is key to our survival and our thriving against the odds.
This year, I am completing a 7-year cycle that started back in 2014 – it has been a period of immense flux with loads of changes and revelations in quick succession. My most pivotal changes during this cycle are part of the self-acceptance and maturation I needed to gain as an adult.
I finally got a proven Stage 4 Endometriosis diagnosis after 18 years of suffering at the hands of medical practitioners who did not have the foresight to holistically and accurately assess my medical history to offer me better medical care. I am learning day by day just how debilitating and disabling this incurable disease is by how it shows up in my whole body, and has drastically altered how I think, act and feel.
I am starting to unpack some of the emotional baggage I have carried around since my childhood growing up under Apartheid in South Africa. I am letting go of some maladapted ideas and beliefs about myself. This too is a journey of bravery, courage and strength.
I am nurturing my passions for writing, reading and having good conversations as best I can. These activities are often difficult to maintain because my current health challenges are sleep deprivation, visual impairment and pressure-build up in my head, which limits my usual go-to ways of engaging with content. This is altogether frustrating whilst also being a unique challenge to solve with the help of tech – old and new.
I am trying to slow down because there is no use in moving at breakneck speed just so you can keep up with a world that favours able-bodied people and expects you to place work in front of everything else in your life, including your health.
The biggest and hardest lesson yet is how to show up kindly for me and not despite myself. These are some of the faces of resilience’ that I wear. And I choose to challenge the medical fraternity to find a cure for Endometriosis.
Endo, as it is commonly referred to by awareness advocates online, is a condition considered one of the most painful diseases to endure by the NHS in the United Kingdom. Endometriosis is a disease that affects 1 in 10 womxn and can be found in multiple parts of the human body, much like cancer. It is currently estimated that there are 200 million cases of confirmed Endometriosis worldwide.
To date, a diagnosis can take roughly 12 years to be confirmed due to the slow and dismissive healthcare systems in many countries. Studies on the full-body-spread of the disease and how it compromises the immune system are slow to gain traction and/or get funding. Finding effective treatments for managing the severe pain it causes and it being recognised by the healthcare industry (health and welfare agencies, health insurance and medical aid companies) as a disability is something patients alone seem to be advocating for. The medical profession when it comes to women’s health has not progressed very far in the 21st Century.
The commonly flouted treatments for most womxn are:
- Ineffectual Over-the-counter (OTC) pain meds
- Hormone Balance using Oral contraceptives and/or hormone replacement therapies
- Surgical removal of reproductive organs (full or partial), tissues, etc.
- Lifestyle changes to help with symptom management
Thanks to competitive sports, misuse after surgical procedures, ease of becoming addicted to pain medications and racial discrimination in healthcare; scheduled pain medication is often not administered by healthcare practitioners because they fear they may be contributing to a growing problem whilst patients identifying as female are made to suffer and endure all-over body pain.
Imagine out of a 30-day period, being in some level of pain throughout a 24-hour day. Pain starts to take on a whole new meaning, huh? Sometimes, there is absolutely no way to just ‘grin and bear it’ though I have done that most of my life in different contexts, and usually it was for the sake of others’ comfort and not my own.
Hormone Balancing is somewhat a misnomer because if nature is not completely balanced all the time (referring to chaos theory for a moment), how is it that a bunch of men in the 1900s decided that the only way to solve womxn’s health issues is primarily through the use of controlling the female reproductive system?
FYI if you are not aware but the control of menstrual bleeding aka birth control, inducing early menopause in women of child-bearing age (age 12 to 40), hormone replacement therapy for menopausal or post-menopausal women (age 40 to 70) are all a means to control your reproductive system. (And at least now in 2021, we have a choice to use it or not, right?)
I am not against birth control or hormone therapies. I am questioning why when it comes to women’s health issues, the only frame of reference to understand the female anatomy is skewed towards hormones and nothing else. Men have hormones too, but the first thing doctors look at when a man walks into a medical exam room is not if their hormones are balanced or not. That is my point.
Surgical procedures are temporary bandaids for an incurable disease. Sure, the surgical removal of organs through ablation, excision or other D&C-type procedures may bring you some welcome relief – it is not a cure. Endometriosis can be found anywhere in the human body from the head, thorax, and pelvis – name a place; there is likely a case of it or a womxn’s story about her experience with it online. So why is it that womxn have to be happy to have organs and tissues and other parts of our bodies sliced and diced to feel better?
After having an organ removed, going for multiple surgeries in a 10-year period (six in total); I don’t feel like subjecting myself to invasive procedures where the only thing my body gains are surgical scars. Cutting out my organs just to live does not seem like a healthy choice at this stage in my journey, especially when it will certainly affect my already decreasing quality of life (by able-bodied standards).
Lastly, when allopathic medicine cannot pick up the tab, there are alternative health therapies like diets and exercise, naturopathy, pelvic physiotherapy, acupuncture and Eastern medicine practices like Ayurveda or Traditional Chinese Medicine). These are great for all-round feelings of “wellness” and are pretty expensive out of pocket expenses for most womxn who are trying to stay healthy and take care of themselves. The reason why the health and wellness industry is so commoditised and corporatised is that there are over 3.5 billion of us fuelling them.
Even though I do my research, ask questions and look for anecdotal recommendations from other Endometriosis patients, I too have been duped by ineffectual or downright bogus products and services. If these company owners don’t have to take the Hippocratic oath to do no harm, it is much easier for them to market bullshit as help, and prey on your sensibilities which are already lowered because well, you require assistance and are somewhat desperate for a solution to your suffering. I chalk it up to part of the human experience.
Happy belated International Women’s Day and March is Endometriosis Awareness Month, so thank you for reading and becoming aware 🙌🌈💝