“Work challenged”

I passed my NCLEX-RN (National Council of State Boards of Nursing Examination – Registered Nurse) this time last March – it’s nearly a year to the day. The NCLEX is the registration exam which is required to practice as a Nurse in the USA.  I can only begin to describe what this achievement meant to me, and to my family. Not only is it a pretty tough exam, but studying with three kids and a husband who does crazy shift-work hours, along with managing physical and mental health problems has been an extremely difficult balancing act. Now that I’ve passed and have been working for a year, I’m looking back on the last 18 months and wondering how I managed to do it all. It’s certainly been the most grueling year of my life, although thankfully not the most difficult overall – it’s still wonderful being mentally pretty stable.

When I first passed the exam, I hit my next wall of dealing with the anxiety of trying to find a job that had all of the necessary requirements for myself and my family. It had to pay well, as Peter has sacrificed a lot of salary for being able to do a greater share of the childcare to release me to work, and to generally be around more. It had to be part time and physically not too demanding so it wasn’t impossible given my finite physical/mental capacities. It needed to be mentally stimulating enough to not mean that I end up depressed because I know I am capable of more, yet not so stressful that it triggers a serious mental health episode. It needed to allow me to ease back into nursing slowly, accounting for continuing to re-learn the parts of my nursing knowledge which were erased by ECT, and the differences between US & UK nursing. We were dependent on finding childcare for Joseph, and the job needed to either be very flexible hours, or to not start until September as the kids all get 10 weeks summer holidays (but financially September would have been WAY too late). Finally it needed to be an organization who would interview me despite not having worked for 9 years, and who would be flexible with references. Not much to ask then! Basically, I was looking for a rainbow unicorn of a job, a bit like this:


(drawn for me by Amelie at the age of 5, and the source of the name of this blog – https://differentblogdotme.wordpress.com/2012/12/23/why-different/)

The problem is that rainbow unicorns don’t exist, according to everyone:


Probably the biggest awareness that I had alongside the practical requirements that the job needed to have, was just how enormous my anxiety around work was. Primarily I was anxious that I would not be able to get back in to work, or if I did that I wouldn’t be able to remain in it (either through not being able to cope pain-wise, or that working would trigger a manic or depressive episode). Alongside this was the fear of what that disappointment could do to me psychologically if I took the risk and tried. I was worried that if I failed I would have let myself and my family down and would have wasted huge amounts of time and money. I felt like I would struggle to sell myself in interview, not because I didn’t believe that I would have good things to offer to an employer, but because I didn’t know if I would be able to follow through on those things.Being out of work for 9 years affected my confidence dramatically, and although I had regained a nursing license, and therefore my overall knowledge had been assessed as adequate for nursing work, my practical clinical skills needed a lot of work before I would feel confident again. I was also in a difficult place for references, as it had been too long since my last jobs to get references from them, and I also lost both jobs due to disability – one because of my physical health, and one because of my mental health. Along with all of those practical considerations, I was mentally so daunted about going back to work because of the ongoing symptoms from chronic pain & fatigue (Ehlers-Danlos syndrome and fibromyalgia), bipolar disorder & PTSD. Every single one of these issues can be work-limiting, and the combination of them all is pretty overwhelming. I have a much more limited number of spoons than an average person (if this doesn’t make sense to you see: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) which means that balance in work/family life is even harder than it usually is.

When I passed the pre-NCLEX exam back in November 2015, I went to a local pub with Peter for a very rare night out together, and we talked through these anxieties. I wasn’t really able to celebrate that I’d passed the CGFNS (Commission on Graduates of Foreign Nursing Schools) exam, or be that excited about the future, as I felt so beaten up by life and daunted by the future. He said something that felt really weird and annoying at the time but that in retrospect was so helpful – he said something like: “Jenn, it is ok to try and fail” or “you do have permission to fail”. Failure in our culture is such a taboo, and having felt like I’ve failed career-wise up to this point has haunted me for a decade. I’ve  watched it get harder and harder for Peter to earn enough money for us to afford to live and pay healthcare bills, but I worried that if I tried to take a part of that and then wasn’t able to continue, that it would affect our relationship really negatively.

My final area of struggle was concern about the fallout that could come from me going back to work. In a very real way I have been concerned that people will look at me and say “if she can do it, then why can’t that person with the same/similar issues”. Or “if she can do it now, why couldn’t she do it years ago”. I want to stress that it’s important not to underestimate what had to fall into place to enable this to happen:

  • I needed the courage to try, despite there being no guarantee of succeeding.
  • I needed support from my husband – including his encouragement to try, even if it could possibly lead to failure.
  • I needed the correct support from doctors, including some dramatic treatments like enough ECT to finally make it out of depression for the first time in my adult life.
  • I needed the support and time to rehabilitate my brain, particularly my memory, from the damage that is caused by the brutality of those treatments.
  • I needed, and will continue to need ongoing care – psychiatric to ensure that I’m on the right medications which allow me to remain stable with side effects which don’t completely interfere with my ability to work, and pain management & general medical to manage the physical symptoms. My doctor-related PTSD makes this hard.
  • I needed, and continue to need good quality long term therapy/counseling input, which requires more than just the 6-12 sessions you get on the NHS. In the USA I’m able to access that without crippling financial consequences, and therefore for the first time in my life I’ve had the opportunity to build genuine therapeutic relationships with practitioners.
  • I needed a great chiropractor, as the EDS symptoms mean that without regular chiropractic care, I have much much lower functionality.
  • I needed a gym which had childcare, as I needed to be able to rehabilitate myself physically, and then to stay fit and active in order to be healthy physically and mentally. In England, the only place I could access that was a particularly expensive and exclusive gym, which was so far from my house that it was very limiting. Here, the local reasonably-priced YMCA provides free childcare while you work out – amazing!
  • Still on the subject of physical rehabilitation, I needed to be non-depressed enough to be able to motivate myself to exercise, and to deal with the initial increases in pain that it brought. Linked to this is that I then needed the flexibility and self-control  to adequately rest to enable me to have the energy to fulfill all of my other responsibilities despite the post-exertional malaise that fibromyalgia causes (it’s easier to push through, but it eventually leads to extreme pain and fatigue which it’s hard to recover from, but pacing is a hard lesson to learn when you’re naturally very Type A).
  • I needed insurance good enough to pay for that ECT, medical care, and therapy – the ECT cost as much as a small house (In the UK I would have been allowed 6 sessions. If there had been extra funding applied for I might have got 12 – here I had 30 sessions of ECT!), and credit good enough to borrow the money we needed to pay our out of pocket expenses for this (Paying off this debt was one of the biggest factors which meant that we needed to sell our UK house).
  • The final (and possibly most important) thing I needed, which wouldn’t have been possible in the UK, was to not have the DWP (department for work and pensions – in charge of governmental disability support) breathing down my neck and looking to take away any kind of disability support the moment I started to have improvements in my mental and physical health. I cannot state enough how awful it is to exist within that system – the one which determines your eligibility for support by assessing what you “can” or “can’t” do, with little to no acknowledgement of invisible illnesses or allowance for fluctuation in symptoms. The system which knows (or cares) so little about the reality of living with disabilities, that they give no flexibility to slowly rehabilitate from severe episodes of illness, and then structure the hoops you have to jump through to get their support in a way that many people genuinely cannot access them. Added in with these difficulties, the political leadership of the UK currently is extremely cruel to people with disabilities and health problems (in fact anyone who is at all vulnerable and struggle to advocate for themselves), and the mainstream media seems to constantly be reporting on these groups as being “scroungers” or “work-shy”. It makes you start to question your own sanity, and whether really there is something deep in your psyche that makes you not want to work, or to contribute to society (which in itself is a vile concept – that you can only contribute to society if you work). The resulting impact on stress levels and the snowballing effect that this has on your ability to manage your chronic conditions, including increased pain and worsening mental health should not be underestimated. It’s a form of societal torture.

So this is it: I am work-challenged. It makes things very, very difficult, but I’m now sitting here having worked for a year, and I’ve not become severely mentally ill. I’ve experienced fluctuations in my physical symptoms, including several very bad flares, but have not missed any work because of them (I’m not working full time, or I definitely would have done). I’m spending this week between jobs resting, exercising and trying to regroup mentally in preparation for starting my new job next week. I’m both excited and very nervous, and it feels like it’s my first legitimate job in a decade, since I got it based solely on my experience, my interview and my excellent references from the job I’ve been doing for the last year. It was nice to read through the job description and agree that I could without any exaggeration say that I believed I could fulfill the requirements of the role.

I’m hoping that the next year brings a little more stability to our family through Peter and myself having more family-friendly jobs, and us getting good health insurance back (we’re back in huge amounts of health debt due to having had very poor insurance for the last year). I’m just glad to actually have a job, and I’m finally feeling less crazy mentally as I know that there was never anything in me that was lazy and didn’t want to work, the circumstances simply didn’t allow it. In fact, I love working. I think I’m actually a better mum now than I was as a (very impaired) stay-at-home mum. As one of my heroines Ruth Bader Ginsburg said when she spoke about her career, having her kids gave her a break from her work outside of the home, and her work gave her a break from her kids. It’s a privileged place to be. Looking forward, I’d like to push things a little further and try to do postgraduate study when Joe goes to school in 18m. This is a terrifying but exciting option. It will be fascinating to see where we are next March.


~ by jennkeast on March 10, 2017.

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