How do you tell your boss, that you have Hydrocephalus? 3-part post

How do you tell your boss, that you have Hydrocephalus? 3-part post


When I was first diagnosed, at age 29, I was a full-time employee.  Therefore, my manager at the time was with me from the start of my Hydro journey.  I remember clearly when I got the results from my CT scan and what happened after discussing the findings with the Neurologist (if only my short-term memory were this good…).  I went to my manager, Ian, and told him I had just been diagnosed with Mild Hydrocephalus and that I needed to have brain surgery.  He did not even hesitate, told me that my health came first and not to worry about work at all.

He gave me his full support and even arranged for special sick leave, which meant my normal sick and annual leave were unaffected.  I had my operation the following week on a Thursday and was discharged from hospital on Saturday, VP shunt in place.  Recovery time was only a few weeks and went well.  When I returned to work, all challenges that came with getting back onto the work wagon, literally forgetting how to do my job and feeling inadequate, he was supportive and understanding beyond my expectation.

The next 2 years were a roller coaster ride as I went through shunt failure, fighting the medical system to get doctors to listen to me when I told them something was wrong.  Through all of this, I felt assured of Ian’s support and never once felt that my job was in any danger…This eventually became like the riding a bike analogy, in time I remembered to do it all again (though it took a little longer) and put some coping strategies in place for myself to help with my short-term memory issues.  I think it was at this point where I became my own worst enemy in terms of my work output, always expecting better and never being happy with the end result or pushing myself to breaking point…

One Monday, I had a telephonic consult with one of my friends GP who told me he would speak to a colleague (Neurosurgeon) about my case and get back to me.  The next day, I got a call to ask if I would travel from Port Elizabeth to Cape Town for an appointment with the Neurosurgeon on Thursday.  I grabbed the opportunity and agreed, not knowing how Ian would respond to such short notice but determined to go nonetheless.  Walking into his office, I explained that I needed to go and find out if there’s something wrong with the shunt and this was the only doctor who was prepared to give me the time of day.  He once again, without hesitation, told me to go because my health was more important. My husband, kids and I left the next morning, and after my lumbar puncture two days later, I had to make a call to Ian and tell him once again that I was facing brain surgery on that following Monday…

The consequences of which was 3 Surgery’s over 3 days, a week in ICU (where Ian visited me while on a business trip, yet I have no recollection of this at all) and an extra week recovering in hospital before travelling back to Port Elizabeth.  This time my recovery took much longer and I wasn’t allowed back at work for just over a month.  My income was secure and so was my job as yet again, I had special sick leave applied for and could recover without that added stress…

It’s not easy living with this condition (somehow saying that feels like an understatement).  I feel blessed to have had such a good manager in Ian at the time.  His personality and attitude along with the good working relationship we had, speaks volumes.  Saying “Thank you” simply does not feel like enough…

The last thing anyone needs when dealing with a condition like Hydrocephalus, potentially life-threatening, is to have the added stress of a financial burden.  For some of us, we are not as lucky as others to have full-time employment and many are fortunate to manage the condition and their jobs at the same time.  However, in some situations, there simply is no choice but to “function as part of a normal working society“,  despite the medical challenges we endure.  This is a form of survival…against the odds

If you were like me, diagnosed while working, what was your experience like?  Did you have support from your manager or was your experience the opposite?  How did you deal with that?

Look out for my next post on dealing with this at present.


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