254 ~ None of it was a lie ~

Coincidentally in time for NERVEmber awareness month, I happened to recall the very first poem composed in my journal during the initial months of being sick; when a young girl in her teens recently confided to me about a pre-existing condition she had which necessitated surgery.

An observation has been made in the case of certain surgeries or procedures; there is no option but to unknowingly trade in one for another or few more.

The surgery was necessary as a last resort and could not be avoided but the consequences some time later led to a cascade and jumble of neurological symptoms which appear to be some type of nerve damage or Dysautonomia.

I don’t dish out diagnosis to anyone but when you’ve lived with a condition long enough, the tell-tale signs are distinct.

She knows something is majorly wrong because her pain is worsening and crippling her day by day.

We’re trying to get her appropriate help but currently she’s in the same position I was prior to meeting my neurologist.

Medical gaslighting:

You’re a hypochondriac

You require psychiatric attention

You have Munchausen syndrome

You must snap out of it and carry on with life

And by now, loyal readers are aware the list goes on…

Dismissal by doctors who aren’t educated with the correct literature pertaining to variable types of nerve damage or dysfunction. But the worst also comes from relatives who laugh at her pain by making snide comments.

If words were metaphorical bullets, these statements of doubt and disbelief that are fired in succession, inflict injuries from which the patient bleeds for a long time after. In worst case scenarios, the wounds eventually lead to death in the form of suicide – as was the case of Christina who’s story I related previously.

S –

I know how you feel because I’ve been there. So with consent, today I use my voice to cast a spotlight on your struggles and all those alike you who are suffering silently in the depths of despair. We are here to fight with you and fight for you.

I still experience and face these remarks but to a lesser degree. They can only be minimized by further awareness but remains an ongoing challenge when living with a rare type of a condition that’s invisible to the naked eye.

Most importantly, mocking someone in pain or the way they’re forced to live with a condition you’ve never experienced stems from pure ignorance but even then, cannot be justified.

I might not have fully understood the reality of chronic pain until I myself became ill but whenever I heard or was told about someone suffering (while they appeared normal outwardly) my heart always went out to them. May I be forgiven if my tongue wrongfully uttered any ignorant words that could’ve been a means of additional pain to someone.

She looks good and perfectly fine, just an attention seeker, they said

It’s probably a bunch of imaginary symptoms conjured up in her head

She must snap out of this continous so-called illness, move on, and live

Alas! How I wish they knew – such comments are hurtful and offensive

For a long time I kept silent not knowing what to say in return

But this deep-rooted ignorance in society is a great concern

If your nervous system revolted against you with a voltage of current

But you were considered psychotic because the signs aren’t ‘so’ apparent

If the shocks flashed in visible shades of lightning blue and fiery red

And you see my muscles blaze day and night, embers widespread

If the shooting pains pierced through with static sparks

Would you still continue passing ignorant remarks

If the spasms zapped all strength and focus from your brain

Thereby drowning it in fatigue from the long-term effect of pain

If for only once, my skin touched yours and burnt it too

Maybe, just maybe.. Then you’d believe me, wouldn’t you?

If the cells in my body progressively degenerate and die

One day you’d find me no more and realise none of it was a lie

But by then it will be too late to apologize or set matters aright

So learn and be a kind human because DYS is a real battle we fight