The Third Shift
By Dannielle Stewart
Does endometriosis feel like a job that you cannot resign from? You’re not alone. Support Coordinator Dannielle explores the concept of how Endo education can be both empowering and a form of work, but you are not alone in your labor - in fact 1 in 9 women share your struggles.
The sound of your alarm is unwelcome, you feel as though sleep was hard enough to grasp yesterday evening without this shrill intruder robbing you of what little you had. As you sit up, there is a momentary feeling of relief and you relax, the tension of a thousand bad days melting away. For a moment there is no pain and you wonder if maybe, just maybe it's going to be an okay day. Then you feel it, the familiar sensation that just will not let you be - pain. The thought of going to work seems overwhelming, but you need to, not just to prevent you from lying in bed all day, but because you have to earn an income. You take the time and effort to make yourself look presentable and professional, trying to hide everything you are experiencing and make it through another day, because you dread colleagues asking after your health, you're tired of explaining and even more tired of being misunderstood.
By the end of the working day, if you're lucky to have made it that far, you are intimately familiar with the meaning of exhaustion, you just want to sleep again. There are things to do though, cooking, cleaning, washing, all of those domestic things that make your world tick. There is another list too, a list of things you know you should do. There's working out, making food that was actually cooked, there's answering those texts or that email that you've been avoiding, they beckon to you. Come out for a drink. Wanna catch up? You want to, but it's getting harder to tell people, "not now", because you're flaring and going out is the last thing you want to do. At the same time all you want is someone to talk to, to spend time with, but someone who understands - that always seems like too big an ask for some people.
After all of that, there is more to do. Your left your last doctor's appointment feeling dissatisfied and a little annoyed, they didn't seem to care, didn't seem to understand how much this pain you feel is affecting your life. Maybe you need a new one, you open Google and start the search, yet again. You read all you can, trying to learn about this disease, learning the different procedures and treatments, learning the differences in surgical techniques, and then searching for doctors who demonstrate proficiency in this. You search for physiotherapists, pain specialists, acupuncturists and dietitians, anything that might help you feel like a normal person again. Every time you do this it is a gamble, a roll of the dice that may not come out in your favour. Instead of elevens and sevens, you seem to keep rolling sixes and nines, and you're so tired of it, exhausted in fact. You feel like you never stop working, and for what?
Life with pelvic pain, endometriosis or adenomyosis can be challenging, and there are different issues to consider depending on which stage in your journey you are at. Before diagnosis the challenge is often a quest for answers, a plethora of self doubt, and trying to find that one doctor who will give you what you need - a referral to a specialist. This can then evolve into trying to find the right specialist, because not just anyone should be treating endometriosis. The right fit doesn't just encompass expertise, but connecting with that person in a way that allows you to build that therapeutic relationship. A good specialist is someone you trust, who addresses your concerns and makes you feel at ease; with chronic illness you'll need them for a while, so it has to be someone you actually like. After a surgery you often enter the challenge of the maintenance or remission of symptoms phase, where your work is focused on managing any residual symptoms, or preventing the recurrence of disease. This can take on many forms, from allied health to pain specialists, to your own regimen of exercise and self care. When your symptoms begin to flare again, perhaps more persistently, there is yet again more work to be done in finding out why, and sometimes that involves finding more doctors or health professionals all over again, researching, all on top of going through the experience of pain itself.
In 1989 Arlie Russel Hochschild studied the so-called leisure gap between men and women, finding that despite women entering the workforce, they were more likely to perform the majority of domestic labour - including child rearing, cooking, and cleaning. This unpaid domestic labour was referred to as "the second shift", referring to women who engaged in paid labour in the workforce, only to come home to a plethora of domestic duties. Dr Kate Seear, an Australian sociologist, built further on this idea of unpaid women's labour in 2009, coining the term "the third shift" to describe the unpaid work of women with endometriosis. Seear proposes that, due to the lack of awareness and limited support available for women with endometriosis, patients are forced to become experts in their own care. This expertise is considered a form of work, and anyone with endo can surely attest to this fact - your research, the appointments, the support you actively seek out, it is hard work. In addition to paid and unpaid work, women with endometriosis have yet another job to do, all while unwell.
Dr Seear argues that there are benefits to be gained from this, however. The expertise acquired gives women a sense of empowerment and control over their own health, and may reduce other stressors associated with the illness, related to lack of knowledge. On the other side of the coin is the notion that the extra unpaid labour contributes to stress in an already stressful existence, especially since the amount of information available can be overwhelming, and there is the added work of determining which sources of information are reliable. Additionally, there is the expense associated with the cost of receiving care, which more often than not is not provided by the public health system.
The idea that becoming an expert in your own condition and experience can be a source of empowerment is something to examine more closely. It can be true that having more knowledge about endo allows one to better plan one's care and management, and actively seek out the right health professionals that work for you. In this case one can gain back some control over an unpredictable illness that frequently renders one in situations beyond tangible control, which impact on someone's mental health in a myriad of ways. However, becoming an expert in one's care is only as good as the resources one has to devote to said care.
A fundamental issue that women with endo and adeno face is access to affordable care, and not just doctors, but allied health professionals too. Compare a laparoscopy and subsequent diagnosis of endometriosis with a knee replacement, for example. One is operated on and recovered in the hospital setting and on discharge the knee replacement is given a regimen of physiotherapy and a follow up appointment. Regaining function and utilizing appropriate exercise and diet is considered a pivotal part of recovery, and follow up is a given, not an option. Most all of these post-op services, as well as the op itself, is covered by a tertiary public hospital, the orthopaedic surgeon is qualified to perform such a procedure, and it is not difficult within the public system to find an appropriate doctor for the job. For someone requiring an exploratory lap for endometriosis, a patient will likely have to go to the private system to find an endometriosis specialist, let alone an excision specialist. A complicated case may also require the services of a colorectal surgeon or urologist to ensure vital structures are not damaged by excision of endometriosis. While there is often a follow up appointment with the surgeon, post op management in the form of physio etc is not routinely utilised, and if it is, again, the patient is likely to require private allied health professionals to access the care they need. Function and psychological impact is often overlooked in favour of a successful surgical outcome - i.e. the endometriosis being gone. A holistic approach is required, but it's not often received without the patient initiating it. While there are many excellent specialists who will utilise this holistic approach, they can be difficult to find, and the need for second and even subsequent opinions is often necessary. The third shift can quickly become too much work, and leave no room for the leisure so essential for self care.
To women out there with these conditions, hard at work to manage them, I see you. I know it's hard, I know you're tired and it's hard to keep going, but you can. These diseases take incredible strength to live with, and even more to live with well. Despite this extra burden, women with endo, adeno and PCOS continue to lead extraordinary lives and devote themselves to the work that is awareness and support. How many of us also volunteer our time to our own awareness projects, despite all we go through? How many of our volunteers give back to their fellow Endo and Adeno sisters through QENDO, unpaid? There is work, yes, but there is a camaraderie in this work because we do not do it alone. There is no need to do it alone when there is support for you. Take a load off, share your work with your sisters, because we are all working hard to make it just a bit easier for the next person, as well as for ourselves.
Endometriosis is often seen as an invisible illness, but you are not, we see how hard you’re working, and we thank you. There is always a place for you to set down your work and rest here at QENDO.
This piece was originally published on The Daisy Diaries, and reposted here with permission from the author.
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