Hydrocephalus : Well you look fine to me…

Hydrocephalus : Well you look fine to me…

These few little words have the power to evoke all sorts of feelings in me once uttered by someone else.

A few days ago we went out for a team lunch and one of the women in the group asked me how I was doing as she had heard I was feeling unwell.  I told her I have a scope that I need to go for and that hopefully, I’ll find out afterwards what is causing my symptoms.  She looked at me and said she hopes all goes well but ended off by saying “Well at least you look fine to me so hopefully. it’s nothing serious“.  I can’t say that I was entirely surprised by what she said because these last few weeks, despite feeling yuck and growing more and more physically tired, I’ve just been going through the motions and putting on a massive pretence.

Besides, what is one to do exactly when you’re feeling unwell and still have all the responsibilities of day to day life that expects nothing less from you?  I still have to wake up in the morning, get my daughter sorted for school and go about my work day.  I don’t exactly have the luxury of staying home just because I feel like it or because I feel physically unwell.  It’s not a “Man flu” situation…In fact, it’s far from it.  I go to work and do the best I can, fighting against my body because that is where my family’s income resides at the moment.

How often don’t we ourselves utter these words to the next person?

Just like the invisible illnesses I’ve written about before, we cannot see with the naked eye that someone might be going through some seriously ill symptoms at any given point in time.  Just like me right now for example.  No-one can see that the inside of my gut feels like it’s on fire all the time, that I have zero to no appetite, that there’s the start of an excruciating pain lurking right in the centre of my stomach (which scares the living daylights out of me).  Or, that I feel so tired because waking up during the night by pelvic pain, struggling to fall back asleep and then only to be woken again, just as I finally drift off, by my 6-year-old daughter because she’s had a bad dream and having to comfort her back to sleep – before I can finally rest.  Then waking up at the sound of my alarm an hour later, I just feel like screaming and bashing my head against a brick wall.  This is my routine on a daily basis…

I’m. Flippen. Tired. And. Feel. Sick!!!

So yes, while I might look fine to you on the outside…take my word for it when I tell you, I don’t feel fine on the inside.

This is true of anyone with Hydrocephalus as well.  We don’t always feel our best but in some situations, we don’t have a choice other than to move on and do what we need to, to get through the day.  A condition like this can be very debilitating for some and others, well…I guess it’s just a matter of mind over matter, a bigger pain threshold and/or level of endurance.  When the surgeon I consulted with at one time said these exact same words to me, I just felt myself dying inside…slowly.

Maybe next time you look at the next person and they tell you that they’re not feeling all that good, watch how you respond and maybe just offer a listening (yet comforting) ear in response.

If you are on the receiving end of this response, what are your thoughts on the matter?

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