career

I am now booked in to have my excision surgery at the end of August at UCLH. The plan is to remove as much as my endometriosis as possible (from my bowel, diaphragm, peritoneum, pouch of douglas, and ovaries), drain my endometrioma, and unstick my uterus and ovary from my abdomen wall. Regular readers of this blog will know that this surgery has been very hard fought for, so I really hope that it is a success and that it enhances my quality of life.

Somewhere between my pre-op appointments and signing doom-filled consent forms, I started to think about just how much pain, sacrifice and trauma we women with endometriosis have to go through for the mere possibility of feeling any better. It seems so unfair and is little understood by those around us. I mean, until we became chronically ill we were used to the following equations when it comes to illness right?:

illness + medication= cured

illness+time= cured

illness+surgery=cured

But this is so different when you have endometriosis, because there is no cure and no appealing treatment options. And, at times I feared, no happily ever after. But I REALLY want happily ever after, so following much thought I decided that I am willing to take risks and fight for that ending. But making these decisions (i.e. to have surgery or a new hormone treatment) it isn’t easy and the path is riddled with more danger, pain, and uncertainty than I feel is really fair to ask of us.

My experience with a chronic illness.

For me, having major surgery means accepting the following things, which seem really overwhelming and scary:

In order to get better, I have to accept that things will be much worse first.

I’ve had one laparoscopy before, but that was a minor procedure whereas this surgery is classified as a major one because of the amount of work being done internally. As a result I face a greater amount of pain and a longer recovery period, before I can start reaping any benefits to my life. I’m also not great at sitting about and resting, so I imagine I will spend my sick leave worrying myself half to death. So that’ll be fun. After my surgery I’m going to have a Zoladex injection too which I’ve heard mixed reviews about.

I am going to have to take a four month break from my PhD. I will not be paid during this time.

While work have generally been supportive, I do think that having yet another break from my PhD does me no favors career wise. This is so frustrating when I have always worked so hard and have big aspirations. I have also been financially independent my whole adult life, so suddenly having to choose between having surgery and having money has been such a difficult decision to make. This decision was make harder by the fact that…

I will be physically, emotionally, and financially reliant on my husband and parents during my recovery.

Guilt doesn’t even begin to describe how this makes me feel. I can (just about) cope with endometriosis negatively impacting upon my life, but I have always tried to shelter the people I love from its grasp. I hate the idea of having to rely on my husband for money, to ask when I need things. And I hate that he and my parents will be having to go without because of me.

Hopefully this will not be the case.

I have limited control over the outcomes of my surgery.

I am going into this surgery for of hope that it will help improve my life, but I know that this is not guaranteed. With any surgery there are risks and potential complications. My former surgeon actually advised me against having any further endometriosis surgeries because of these, she said: ”The risks aren’t worth it for a disease which isn’t life threatening.’‘ She clearly has never had to live with a chronic illness. In my case the amount of bowel work that will be done means that I may end up with a temporary colostomy bag :S I don’t look forward to this and am hoping and praying that it won’t happen, but sadly it is not an outcome I can control.

I have limited ability to plan for my future, both in the short and long term.

While all this is going on, it’s just impossible to make plans. Not that stops people asking: ”When will you be back at work? When will you finish your PhD? When are you getting a job? When do you want to move house? When shall we have a baby?” I just don’t know right now, and I find that hard as I’ve always been a natural planner who is sure of their next step.

I don’t want to face any of these things, but I will do anything to try and feel better. I know my life can be so much more than it is right now, and I know that I can be brave and get through this somehow. It makes me so angry that I and all you other wonderful women have to go through these repeated surgeries and hormone treatments in the hope of some relief. I don’t think healthcare professionals or employers understand the massive impact that these things have on our personal and emotional lives. But all we can do is have hope, and be brave, and keep believing that things can be better for us.

I’d love to hear your thoughts about any sacrifices you’ve made to have treatments for your endometriosis or chronic illness. Or how you get through the difficult times pre/post surgery.

Love.
Claire
xxx

Happy new year to you all- I hope you all had a restful Christmas break and that 2015 has started well for you! I haven’t blogged for a little while now, but have decided to start this year with a post that is very personal and emotive to me at the moment, about working and studying when you have endometriosis. Having had a good rest over the past couple of weeks I now feel strong enough to write about it. While it may be slightly gloomy in places, I know that having a successful career when living with endometriosis is possible (see here and here for some helpful guidance) and I am working towards this in the future. Until then, I have a lot to figure out. Happy reading!

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In October 2012 I enrolled on a PhD program, which means that I get paid for three years to conduct and write up my own research project. I’ve always been one of those straight-A nerdy types who dreams big for her career, so when the opportunity came up for me to do a funded PhD at a top university I jumped at the chance. It was like all of my dreams coming true at once. However, as I know you all understand, life doesn’t always work out as we plan, and starting my program coincided with a major turn for the worse in my endometriosis symptoms. As a result my professional life has gone a bit titanic, and I have spent the last year questioning whether I will be able to complete the program. This is not something I ever imagined contemplating- I am not a quitter, even when things get tough. So, thanks life- for nothing!

Having micro-analysed the situation in my usual manner over the last couple of months, I think the difficulties I have experienced in trying to maintain a normal/ professional level of functioning at work stem from the following issues:

It took AGES for my endometriosis to be diagnosed: While I had multiple hospital appointments in various hospital specialties since the start of my PhD, very little progress was made diagnostically, or action taken to address my symptoms. I think of this times as ‘THE DARK DAYS’, as I struggled to understand what was happening to my body with little support, and was basically freaking out that I was dying. That sounds way more melodramatic than it was at the time- trust me. I knew something was very very wrong but nobody was listening to me. When my doctors did finally notice my endometrioma, they spent weeks terrifying me that I probably had ovarian cancer, and would need surgery to confirm this. Looking back, living on terror alert was not particularly conducive to focusing on my work. So, I started to get behind with my project from the start.

My symptoms have become progressively worse: Since 2012, I have gone from being what I would classify as feeling ‘quite unwell’ to feeling ‘very unwell’ on a regular basis. I am sometimes incapacitated by pain (usually in my leg, bowel, or shoulders) and/or fatigue. Work tasks that I could initially manage with ease, such as transcribing my data or going out to interview people now require much more planning and willpower to complete. Even with the best will in the world, some days I just can’t do anything. When I do go into work, chronic fatigue’s free gift of brain fog often holds me back, which for someone whose job relies on their cognitive abilities is a massive problem. It is like my ability to read and retain information have been completely obliterated, it’s really weird and disconcerting. I haven’t figured out how to overcome all of this yet.

My mental health has taken a battering: You have no warning to prepare you for how frightening and bewildering it is to experience endometriosis symptoms, go though the process of gaining a diagnosis, and having to start managing your life with this disease. I haven’t seen much written about how traumatising it can be, although I see it so clearly between the lines on twitter, in blogs, and at my support group. I know it isn’t just me. I walked around in a daze for several months, just trying my best to survive from day to day. My mental health is gradually on the mend now I think, but for ages I was having fully fledged breakdowns on a weekly basis because of anxiety and depression caused by my endometriosis. So when in the office, there has been less working and more crying in the toilets, that sort thing.

This is me every day at work. Credit: A Thrift Mrs.

This is me every day at work.
Credit: A Thrifty Mrs.

So now, I am basically very behind with my project, and am struggling to move it forward. I keep swinging back and forth on what I should do about it- quit or carry on? I have tried to be proactive in the last few weeks about the situation… I have spoken to my supervisors (I’d rather have been fed to snappy turtles before I did this, but they have actually been more understanding than I was expecting), my college tutor (who arranged counseling for me and was an excellent shoulder to cry on), and to the Disability Resources Center (who provided lots of practical advice on working with a chronic illness). I am glad I did all these things, even though I was scared to tell people, because your colleagues can’t be on board with you if they don’t know what is going on. My supervisor went through a period of publicly calling me ”lazy” (which is clearly mortifying) but that has stopped now. However, I’m still haven’t had any concrete action come out of these meetings as it is fairly early days yet. However, I do think being a PhD student, as opposed to somebody in non-student employment has screwed me over when it comes working with a chronic illness because:

You have limited rights as an employee: Paid sick leave? Nope, we don’t get that. I have been informed that I am entitled to ‘intermit on medial grounds’, which means I can have an extension on my PhD deadline for the time I have missed because of my endometriosis. Sounds good right?! However, during this intermission my funding will be frozen- so I will be expected to carry on working to catch-up, but for free. FREE! This makes me sad because I feel like I need a break and the time to catch-up on work to reduce my stress. However, speaking to my fiance confirmed my fears about this radical course of action, I think the phrase ”starving to death” came up at one point. We have commitments to a mortgage and are getting married in June, so cutting off my income right now just isn’t feasible.

Time is of the essence: If I don’t intermit I have until September 2015 to submit my PhD. So, endometriosis ground me to a standstill and brought me to my knees, but unfortunately time does not stop with you. The Disability Resources Center suggested some helpful interventions that could be put in place to help me (new software, study skills training, a book allowance etc), although these things are dependent on a funding application, which takes months, which will then clearly only help me in the final few months of my PhD and cannot undo the damage that has been done so far. ”If only you were in your first year” they kept saying. Helpful!

So basically, I’m totally screwed aren’t?! This whole situation is making me unbelievably miserable. And I haven’t even mentioned everything that is challenging, like annoying colleagues: There is always one who knows the worst thing to say at any given moment: See ”I admire you for thinking about quitting, MOST people would just carry on and do what they’ve got to do” and ”You had surgery, so you must be a bit better now.” Grrrrrrr! I’ve made such a pigs ear out of this PhD that I can’t see me landing a job in research afterwards. I’ve come across as flaky, unmotivated and depressed I think- not a good combination for employers. And to be honest, I’m not sure I’d want it any longer anyway, I just can’t keep up with the fast-paced publish or perish life. My current thinking is to just keep my head down, keep working on the PhD as much as I can, and then deal with it the best I can if/when I have to submit late. I know its childish, but sometimes I wish I could just press pause on my life, or just run away from it and start again. Do you ever wish that?

Thinking more long-term, I’m wondering if the kind of high powered and stimulating career I always wanted will actually be accessible to me now. Should I think smaller and take a little low stress 9-5 job that will protect my health, or carry on thinking big in a ‘this will not beat me’ style? I’m scared of letting people like my parents and fiance down, they’ve invested so much in belief, time and money in my education for me to throw it all away. I just don’t know what to do and it’s just heartbreaking at times. I’ve got so much to figure out.

So that’s my experience of working/ studying while living with endometriosis. It’s not particularly pretty, but it’s really early days for me and I am still trying to figure this stuff out. I think my story further highlights the need for earlier diagnosis and for more holistic post-diagnostic support for women with endometriosis though.

How do you manage to work with a chronic illness and/or chronic fatigue? Did you change your career-path pre/post diagnosis? Are your colleagues supportive? I really appreciate your advice and tips, and am interested to hear your stories.

Love,

Claire

xxx