How do you tell your boss that you have Hydrocephalus : Present

How do you tell your boss that you have Hydrocephalus : Present

My past experience has been somewhat different from where I am now.  It almost feels like it could be worlds apart…in fact, that’s exactly where it’s at.  Better..? Or worse..? Hmmm..

I left my home country, a few years after diagnosis, shunt surgery and eventual ETV, in search of and hopeful of better medical care in a “first world country” (I hate those words btw).  And, at some point, the need arose for me to share about my health condition with my employer.

They were very empathetic, offered any help they could possibly give and, with words like “your health comes first” (De Ja Vu), I can’t help but feel comforted.  The thing about it is, at that point in time, they had no idea what they were signing on for, no idea just how negatively it can affect all parties involved, etc.  It’s also no use me listing all the possible things that could happen…What’s life really, if living it that way especially if it may or may not happen?  However, giving them the basics of what to be on the lookout for in case of failure, is probably the most sensible thing I could have done.  I always say “be the boy who cries wolf“, especially since you’re better safe than sorry.

It wasn’t something that I was necessarily hiding but because I felt my performance wasn’t up to the standard before my Hydro journey began, I sort of kept it to myself. I would probably go as far as to say that I didn’t want to be judged, treated differently or even jeopardise my chance at being seen as a useful member of staff.  More than that, I did not want to get dismissed and be in the position of not being able to provide financially for my family.  This way of thinking remains with me till now…

I’ve always felt the need to shy away from drawing too much attention to my condition as far as my employer goes because the way I see it, their bottom line is “how useful are you to me and how much can I actually gain out of you“. (This is my own opinion and not necessarily true). I’d also say that I’m quite possibly harder on myself than the expectations set before me but, I need to prove myself to more than one person at this juncture…(me included).

Having an employer who actually gives a shit and is empathetic to the roller coaster of uncertainty that accompanies this condition is a pure blessing.

Another feeling I will openly share is feeling like I’m not good enough according to anyone else’ standards because of my memory and processing issues. These are probably two of THE most troubling consequences of the brain surgery I’ve had. My self-confidence has taken a huge knock in this regard as well. The crazy thing is, despite my employers singing my praises and telling me, time and time again how much value I add, I still struggle to believe it. I just constantly think “You have no idea how hard I have to work, how much effort it takes to pull off a day’s work, how flustered I become most days and how scrambled the inside of my head feels“. If I had to analyse the reasons why, the biggest one would probably be the fact that I know the pre-me, the person I used to be before diagnosis and surgery. I almost feel tainted…

Unfortunately, when I immigrated, I was led to believe that I would be fine.  That if my ETV didn’t close within those first 5 years, then I stood a good chance of possibly never needing surgery ever again.  I know at this point most people with Hydro would be going “There is no cure…so why would you think or believe that“.  Well, I don’t know about you but, this has been one journey which despite only being 10 years old, is still teaching me some valuable lessons…all the time.  I now know better and understand that even though I’ve been feeling “fine” and haven’t suffered daily chronic headaches, I’m not naive enough to let my guard down.  This has since changed since a few weeks ago when I rode the Hydro headache thrill ride (no sane person would get on this one, not even a crazy thrill seeker).

In hindsight, I think from the time of my diagnosis to pre and post op, none of the surgeons actually explained the full effect of this condition to me.  Not at any point did they divulge that this is a potentially life-threatening condition for which there is no cure, except treatment with brain surgery.  It’s only through experience, Google searches (Yes, I actually find use in it despite what people say about staying away from Dr Google), Facebook support groups and the connections I’ve made, that I understand There is no cure…yet, so thinking that I am is just plain ignorant.  And, I would not have had enough sense, at the time, to ask the questions I will now.

But, that’s life right..?  I suppose I feel more uncertain and less secure in many aspects but what’s a girl to do?

My next and final post on this topic will look at dealing with a prospective employer…it should be interesting.

So what’s your experience like in your present job? Have you mustered up the courage to divulge your medical condition?  Are you feeling overwhelmed, scared or concerned?  If you have a success story in this regard, why not share the recipe?


  • Pati David

    December 31, 2018 at 11:33 am Reply

    I was diagnosed at 18 but no op needed at the time. Im now facing doing shunt or ETV but I couldnt yet talk to my employer about it’ I spoke to a coworker and my direct boss. But Im struggling about how and when telling my employer

    • Skyewaters

      December 31, 2018 at 3:24 pm Reply

      As I don’t know your reasons for not yet telling your employer, it’s a bit difficult to comment.
      I would, however, advise doing so sooner rather than later. It’s a personal choice and one no one else can make for you. Hope it all goes well with your surgery and that whichever treatment option you go with, works well for you.?

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