(This article was originally written in 2018 for a support page titled: Chronic Love Club. I forgot to share it that time so posted it now. The font type sizes are different due to copying & pasting from the email it was forwarded)
“But, you don’t look sick”
“It does not seem like you have the common flu”
“You doing something, so you fine”
“Putting on an act”
“A hypochondriac”
“Seeking attention”
These statements are all too familiar & vex me when observing the extent to which society is blindfolded regarding the reality of illnesses termed chronic & invisible.
As a result, we, the chronically ill community endure back lashings, accusations, assumptions, judgements & an unending list.
Apart from managing a vast number of symptoms alone – a battle of its own, an added burden is the absence of cognizance.
Im absolutely glad & grateful I don’t look how I feel because then I’d probably look horrid & unrecognisable too.
At the same time it’s important for able bodied people to remember; PHRASING has an enormous impact when trying to tell us how we look / appear.
We don’t expect people to understand a condition they haven’t been through, but we do request them to equip themselves with knowledge & verity of the matter.
A few of the most heart warming comments are:
“I googled your condition to understand”
“I read your blog post”
“Don’t be afraid to express yourself“
“The truth is bitter but it needs to voiced”
Like these few there are many examples of offering reassurance which is an elementary requisite along this journey.
We observe who has an interest in us & gauge from there who we can or cannot relate to…
I also enjoy hearing about family & friends lives, as well as events occuring around the globe because it allows me to feel a sense of normalcy. The world does not revolve around my challenges only…. This depends on an individual’s preferences.
Some become uncomfortable in our presence not knowing what to say or the type of conversation that should be held.
Some are too absorbed in their own pursuits.
Some speak only about themselves – a sign of insensitivity.
Some mean good & say it in the wrong manner
By the way questions, will recieve by the way answers.
There are only a handful who know what to say without having undergone or being in a similar situation but we can definitely change this percentage.
In December 2017 at a college graduation I met an old friend..
From a huge crowd of people who complimented 1 after another about how well & better “I look” making me exasperated as inside my body raged an imperceptible war..
She saw beyond
Past & through.
Without being in touch for months & years…
She heard unspoken words.
Why would someone be dependent on oxygen? A sign that “something” is majorly wrong.
Her response – distinctly rare.
“I’m honestly deeply saddened to see you in this condition with oxygen on all the time”..
Not lip service, facial expressions which mirrored concern.
Its connecting & uplifting to have people look pass external appearances.
As quoted before:Beyond the beautiful clothing worn and adorned
Beyond the bright smiles and striking eyes
Beyond the makeup brush and touch
Personally, I smile genuinely because I embrace my imperfections & focus on the blessings instead of what appears to be depressing. This life on earth is not meant to be perfect.
However, here’s a painted scenario of what a normal person thinks seeing someone smiling:He / she is fine.
Everything’s rosy.
Factly! Behind this wide smile & set of eyes, once upon a time, many rivulets cascaded from the cracked gashes of a soul residing within.
Behind every smile resides loads unweighed.Behind every smile resides unknown pain veiled.
Behind every smile is a fierce combat continouing day light or twilight24/7 non stop are the symptoms of our diseases fought.
Smiles are the masks of hurdles overcame.
Smiles are an answer when we’re too exhausted for words or as a silent response to dumb remarks…Even though lips are sealed, smiles can also convey various codes, it’s up to an onlooker to decipher the correct message and reach out.
“Eccedentesiast“A person who hides pain behind a smile
Formulation of words & action does not require contemplation. It flows naturally when 3 qualities are intertwined:
1) Awareness
2) Compassion
3) Patience
Reaching out stems down to these fundamentals:
* If a loved one has chronic conditions, you’d patiently care to learn what the physiological & biological effects entail, in order to assist & be a pillar of support in the best way possible.
* Spread the same awareness to generate & cultivate a solicitous environment.
* A chain of inspiration begins.. From 1 persons seeds of kindness planted, many positive changing outcomes bloom & flourish a result thereof..
Know that you are making a difference & impacting souls when meeting someone who looks normal / a chronically ill / their family member, instead of saying how they look..
Ask:
“How are you truly feeling?”
Or
“I admire the fact that despite being ill, you mantain your appearance. Though, how do you feel inside?”
“How are your symptoms?”
“Are you coping?”
with a keen desire to know & help.
🔹These questions kindle hope
🔹Improves our sense of living🔹Decreases suicidal rates
🔹And of course endless ripple effects
Improving the world does not require skill, profession or expertise!
It only calls for having a 💖
Change begins with me, firstly.
“The best of people are those who benefit mankind”
– Prophet Muhammad (Peace and salutations be upon him)
As we toil sincerely, our efforts will shine & ignite peoples paths…
A beacon
Am I?
Are you?!
Swimming Through The Waves 