‘Negative space, in art, is the space around and between the subject(s) of an image. Negative space may be most evident when the space around a subject, not the subject itself, forms an interesting or artistically relevant shape, and such space occasionally is used to artistic effect as the “real” subject of an image.’ Quote taken from Wikipedia
The internet can be a funny thing. On one hand, we have the ability to portray the best version of ourselves. However, this is usually heavily edited to exclude any non-desirable sections (such as mundane daily tasks – washing-up, doing laundry.. you see where I am coming from here). But on the other hand, by excluding parts of our lives that are less than pretty, significant sections can be subject to omission. Sometimes, it is what resides in the negative space that is of equal importance.
What do I mean by important? If any of you simultaneously follow me on Instagram as well as here, you will have seen this post I uploaded recently. For those of you that missed it, here is the text in its entirety:
For some time now, I have considered sharing this, but for some reason or another decided not to. However, a number of factors have contributed to my decision to share now, one of which being that March is Endometriosis awareness month (although contrary to the title, I suspect many people are not aware of this fact). Just over two years ago I was diagnosed with Endometriosis. For those that don’t know, Endometriosis is a chronic condition (which means it has no cure); and requires lifelong management. For each woman, the symptoms of this condition are different and can vary wildly. For me, my #endometriosisjourney started when I was just 12 years old. Menstruation was an unbearable hell, and for the days of the month that I was not menstruating, I would live in terrible fear of what my body would do. This was greatly ignored, and I was told that what I was experiencing – agonising cramps, sickness, diarrhoea, fainting, unable to walk due to intense pain down both legs – was ‘normal’. This is not normal.
For my teenage years, I put up with this demon in my body. I would miss days from school and college, and would feel like a failure for the way my body was behaving. Finally, when I went to university I decided to go on the contraceptive pill, which did alleviate some of my symptoms. Then, in my mid twenties my symptoms started to worsen. I’m ashamed to say this now, but as up to that point I was made to feel that I was ‘being a wimp’ that what I was experiencing was only what every other female on the planet was experiencing, I felt that I had to just put-up with it. So, that is what I did, I lived in a cage of unpredictability, surrounded by my own guilt at not being able to cope with it all. Until two things happened. I entered into a relationship with my now fiancé – who made me research what was happening to my body, and also made me realise that I should not have to put up with any of my symptoms for any longer. Also around this time, my symptoms actually worsened significantly. So finally – at the age of 29, I went to the doctors and practically demanded they give me some answers.
So, just shy of turning 30, I was finally given the answers I sought, and diagnosed with Endometriosis. That was just over two years ago, and although I had an operation to remove the Endometriosis tissue, I experience symptoms each and every single day. A few months after my operation, I was vomiting uncontrollably, whilst experiencing diarrhoea, losing consciousness, and agonising pain. I remember laying down on the bathroom floor, drifting in and out of consciousness sobbing. I thought the operation I had would magically erase these symptoms, at least for a few years. But barely two months later, there I was. As soon as I was strong enough to get myself down the doctors, I begged them to help me. Their answer was again to go on the contraceptive pill, which I am still on to this day.
Endometriosis is like living with an uncontrollable entity residing in your body. At its heart it is unpredictable, isolating, and actually frequently makes me feel like I am a failure. I am posting this in the hope that by sharing my story, I may give hope and comfort to others. Seventeen years is too long for diagnosis. Listen to your body, look after it – and give yourself a break. I know I need to take my own advice here – but girl, you got this. You are stronger than you think, and in fact, stronger because of the trails that Endometriosis throws at us. Thank you to @myendometriosisjourney for giving me the strength I needed to be able to share this.
Incidentally, I actually typed all of the above at 4.10am, as I couldn’t sleep due to endometriosis symptoms (which can often be the case).
As afore mentioned, this is something that I had not previously posted about, or shared online. In actual fact, only a handful of people in ‘real life’ know this about me, and now, you dear reader, do too. So why share this personal information now, or indeed, at all?
Does it scare me that I have shared this deeply personal and private information about myself? Of course it does. BUT – I realised, that in my darker moments, in the grip of hideous endo symptoms, I turn to the online community for support. It goes without saying that my fiancé is absolutely incredible, and supports me in more ways than I can express – and I am fully aware of how lucky I am to have this. But many women do not have the same support, they are alone. For many years I too felt alone, so I am hoping that by sharing my story, I can give some hope or comfort to others.
Currently, my endometriosis affects me daily. Some days the effects are minimal – mild ‘background’ cramping and fatigue. But other days the effects are more debilitating. This can mean having to cancel social engagements, rescheduling work commitments etc. Obviously, this is incredibly frustrating, and can lead to feelings of anger, self hatred, uselessness, etc. In the comments section of the Instagram post I describe ‘feeling that somehow I am defective, like a sample at the factory that didn’t turn out right.’ Reading this back it sounds terrible, but in the grips of endo symptoms and pain, those feelings can unfortunately ring true in my head.
So where do we go from here?
Now that I have shared this information with you all, I may occasionally share endometriosis related updates, both here and on my Instagram. I know that a good percentage of you will find this of no interest, and of course that is both totally fine, and understandable. But for those of you whom I may (hopefully) be helping, these posts are for you.
Any questions that any of you may have – what operation did I have, did I have any other tests to reach a diagnosis, what medication do I take, dietary changes etc, do leave a comment and I will try to reply as soon as able. Or, if you prefer drop me a private email instead – firstname.lastname@example.org.
I’m just me. Just Jenny, a thirty-something woman living with endometriosis. Of course I do not have all the answers (heck, I only heard the term endometriosis when I was actually diagnosed – barely just over 2 years ago!) But I’m a face you can put to a name. And if I can help you, my inbox and comments section are here for you.
Endometriosis UK. Excellent organisation providing information and support for both those with endometriosis, and their friends/families. This was my go-to website when I was first diagnosed. Includes information on what endometriosis actually is, symptoms, treatment options, managing the condition and much more. – https://www.endometriosis-uk.org/
What is Endometriosis? See here – https://www.endometriosis-uk.org/understanding-endometriosis
Endometriosis Org (global platform) – http://endometriosis.org/
Lastly, I want to stress that this blog post is not a ‘woo is me/poor me’ post of any kind. I realise that many of us have secret battles, trials and tribulations that they would rather keep concealed. My reason for being frank and honest about my endometriosis is purely to help those with the condition perhaps feel a little less alone.
Until next time dears x