The Language of Endometriosis isn't a complicated notion; it is in fact a very tangible feature of living with Endometriosis and is at the heart of running an Endometriosis Support Group.
Endometriosis, Laparoscopy', Gynaecologist , Zoladex, Mefenamic Acid, Tens Machine, Hysterectomy, HRT, Mindfulness and Infertility are only a few of the myriad of words that populate the 'Endo-Language' that we, as patients, are surrounded with.
What makes a support group so potent is that we all speak this language!
For a newly diagnosed patient, so much of this 'speak' is brand new and with this newness comes fear and apprehension; what does it all mean? how does it effect me? who else understands?
For a long-term Endometriosis warrior (because that is what we are) this language becomes familiar as we clock up dozens of appointments, surgeries, medications and have had the time to allow discovery through on-line research and social media groups.
Anyone reading this is most likely falling into the bracket of 'on-line researcher' and will understand what I mean when I say Endometriosis related words pop out from the search engine results like frogs on a hotplate and it is these familiar words that form the basis of our own understanding of this disease and how it relates to our own health footprint.
The trouble is what happens next with all this information we access and process; who can we talk to that not only understands this information but can bring it to life through personal understanding and contextualisation?
Family members can support emotionally, and can often be very much involved, but this is not a given and many women are unable to have a straight conversation about Endometriosis with either family or friend. "Endo what???" is often the first stumbling block!
The word 'En-doh-me-tree-osis' appears that hard to pronounce (bit of a tongue twister apparently), and in my experience, most people begin to shut down their listening at that very first introduction; and if that hasn't begun the alienation of Endometriosis language then the explanation when faced with "and what exactly is enderrmetrsis?" certainly hammers some nails into our 'lets talk about it' coffin!
"Well its when the cells in the lining of my womb are found in other parts of my body" is not only awkward for a sufferer to have to talk about what is, quite frankly, gynaecology; and its often uncomfortable for the listener to suddenly be faced with someone bravely tackling the great battle of an extremely rebellious uterus, sorry ovaries that have been banished to lands afar and not forgetting extremely aggressive bowels.
Personally, as a seasoned 'endo-talker', I have no trouble broaching the conversation surrounding what Endometriosis is and I have my much versed patter that enables me to confidently introduce Endometriosis to the listener ; only last week did I explain my illness to an elderly gentleman. He asked and I went for it, and he listened ... paused ... and then told me all about his prostate. We bonded amongst the wastelands of gynaecology and urology!
It is however, anecdotes apart, very hard indeed to feel wholly comfortable explaining and sharing ones gynaecology; if one had a gender unspecific and more 'well known' (familiar) disease then no explanation would be required as people would already know the answer to their questions. This does however highlight the need for talking, sharing and breaking down the walls of taboo as we ultimately aim for a society that 'knows' Endometriosis; all relative to its prolific place within women's healthcare.
Taboo features heavily within the root psychology of Endometriosis and society, placing this disease in a position that does not sit well within a normative male society, compounding the difficulty of having a female gynaecological disease and taking it appropriately serious compared to other less destructive diseases. This is a deep conversation best left for another blog, but in regards to language of Endometriosis one must consider that taboo does directly effect how Endometriosis is received by the listener (and society as a whole)
The sooner we get talking the better, like most languages it is better to learn young and be aptly fluent when the need is required; there should be more awareness during school based health education. Prevention is better than cure, but how can we do this when so many young women are unaware of Endometriosis; unaware of the startling statistic that 1 in 10 women are affected by Endometriosis. How can women be watchful of the disease when no-one cares to warn them about the symptoms in the first place,
This is why support groups are a revelation, it is a face-to-face forum where we all speak the same language, we all speak Endometriosis, We don't have to apologise, we don't have to explain at all; in fact we can sit, watch and listen (listening is the biggest part of communication) and feel the isolation of illness melt away like rain clouds leaving a darkened sky. It can be a place to say out loud, in safety, the things that have been left unsaid through fear or hesitation, its a place to learn and gather experiences alike your own, its a place to be inspired by the strength and fortitude of others and its a place to offer an ear and hand to others also in need of support..
Words are powerful, and there is no doubt that finally (or momentarily) being understood brings renewed determination to continue ones own health journey with courage, however the greatest strength in words is that of support and encouragement; it takes only a moment to show compassion and understanding (and costs nothing but a little time) but the ramifications can truly be felt a lifetime.
