Imagine having a way to communicate your invisible illness to those around you visually…

Imagine having a way to communicate your invisible illness to those around you visually…

This morning I woke up at 4 am with the start of an excruciating episode of stomach pain (only too familiar to me). I lay waiting to see if it would escalate while praying that it wouldn’t. However, that was a futile prayer because sure enough, it was one for the mother load of episodes. I managed to get out of bed and take some painkillers. My prayer for it to not escalate soon turned into a prayer for it to end and ultimately, crying myself back to sleep, I prayed for death. The intensity of it is like nothing I’ve ever experienced…Id take childbirth and brain surgery over this any day.

I eventually succumbed to slumber 2 hours later with an hour to spare before my alarm went off…Grrr
Thinking about it later this morning, I wished silently that the intellectual scientists of this world could invent something that could mimic the pain within the body. If robots can build entire cars, then why not?

Bear with me…

I realised that, just as with any other invisible illness, my family especially, would be oblivious to just how battered and rotten I feel. This is particularly true as I continued making coffee/tea, lunch, prodding and eventually shouting at my daughter to eat her breakfast and get ready for school (stressfully watching the clock). I neglected my parental caring and required affection and, let it slip as the moody tiredness of my body and the pain in my abdomen made it impossible for me to be anything but pleasant.

I picture this “contraption” being a robot where you could describe how you’re feeling and as you speak, it highlights with colours and animation of what this could possibly be doing to your body at that point in time. More importantly, you (or anyone watching) would get to see the scale and extent of the pain. It will give a visual of the effects on you and pinpoint the likely source of pain.

Vividly…that’s what I envision for me and anyone else who needs this sort of communication.

Have you ever gone to the doctor/specialist and tried to explain in vain your symptoms?  And, at the same time possibly struggle to find the right word/s to describe what you’re feeling?  Questions like: Is it a dull or sharp pain?  Does it come on suddenly and what makes it worse/better?  Where exactly do you feel the pain/discomfort?  It’s this kind of questioning that normally gets me confused especially if I need to recall it from a month or two ago because I was only able to secure an appointment now, after my last episode.

Explaining a Hydrocephalus headache for example, and pointing out exactly where I’m feeling the pain, which part of my head.  Or if it’s, throbbing, pulsing, the weird feeling in the back of my head, feeling like my brain is going to explode or even dizziness, etc.  These are all things that I sometimes wish I could have a visual display of, to get the message across to the next person…

I left home not entirely sure how I would make it through the day. I picked up 2 bottles of red bull and some painkillers at the supermarket before catching the train to work. I can’t say that it really helped but it was worth a try. Somehow I made it through with immense effort as I kept busy enough for the day to pass.

On a brighter note, I got a call yesterday afternoon for an emergency Gastroscopy which will be in 2 weeks. I’m hoping and praying the dreaded pain doesn’t come back again and I get some much-needed answers. A week after that, more surgery after a 7-month wait…I am so glad that I finally have a date but am so not looking forward to the 6-week recovery.

Oh well…

Who knows the robot idea might just be doable…maybe in another lifetime, one can only dream I suppose?

Anyone out there clever enough to literally come up with this, feel free to run with the idea 😉


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I blog about Hydrocephalus and Selective Mutism to give a voice to the millions of people around the world with this condition and disorder.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

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