Coping with "Invisible Illnesses"

A.J. and Poppy together at the park

As I was preparing the finishing touches to my latest blog post, I was side swiped with another issue that needed to be addressed first.

Our grandson has yet again faced the inhumane behaviour of others, too hell bent on gaining laughs and self-gratification from other's misfortunes.

After posting this quick comment onto our Facebook page, I was taken aback thinking about the enormity of this type of issue.

“It's times like today that my heart just breaks into tiny pieces as I try to comprehend the reasoning behind why kids have to be so cruel!
Having to repeatedly come to the realisation of how hard our kids are still struggling with the concept of social understanding.
I am so irate at the thought of the level of cruelty and bullying that can and does occur;
without being held responsible for the emotional turmoil they cause regarding trapping our kids into the false perception of wanting to be their friends and even having some go as far as repeatedly stating they want to be their “girlfriend/boyfriend” 

this is the third time some annoying little prat thought it was funny to tease and humiliate our grandson;
having him face the inhumane behaviour of others, too hell bent on gaining laughs and self-gratification from other's misfortunes.
and although the concept in its entirety is not understood by our kids,

the thought of having someone want to be nice to them is definitely what they want to accept.
--may these kids one day learn a valuable lesson.”

My thoughts put down in words, relay the emotion I felt when hearing our grandson repeat in his words the actions he experienced by these supposed peers and classmates.

No-one can truly comprehend how a person would feel without being on the firing line and experiencing similar actions themselves.

The pain and anguish the family must face for so many reasons, due to underlying situations and medical conditions that others don't see visually and the “odd” behaviour used as a target to those that want to tease and taunt.

All too often we see the results of people with these “Invisible Illnesses” being targeted, bullied, shamed, and not believed regarding their true diagnosis.

Whether others are afraid of what they don't know or understand, or whether they just see vulnerable easy targets for continual harassment.

It is sad to admit we are seen as a race of people wanting to attack others with negative words and actions for no specific reason, while seemingly numb of feelings and emotions; this has me speechless and dumbfounded as to what can be done.

The thought of all this has brought up many emotional aspects that I face so often, like many families, while having to encounter the aftermath of issues beyond our control.

When seeing the ones you love suffering with medical conditions and mental health issues is very difficult, especially when we're unable to help them, no matter what you try to do.

Mental Health covers a vast array of conditions that many people, children and adults, may face during their lifetime, sometimes it may be short term, or sometimes it is listed with

other medical diagnosis that cause a long term and permanent debilitating condition, although all are from issues the person has no control over.

Viewing the effects for myself, while watching my husband continually facing struggles due to his P.D.S.T. (Post Traumatic Stress Disorder); no-one can really understand what it is like, sometimes the ones going through it struggle to understand the full extent.

With varying emotional imbalances from both A.J. with his sensory and anxiety issues, and hubby with his moments of highs and lows, and then the confusion of emptiness in-between.

Although they both fit into separate categories relating to medical diagnosis and assessment criteria, they both face the frustration as to what their internal body is wanting from them, while also struggling externally to fit in to what society is expecting of them within the unknown area of social acceptance.

My emotions are so raw as to how I can handle the enormity of our situation at present,

when hubby goes to seek medical advise only to be told,

-“if you won't take medication, then I can't help you! Go for a walk!”

I believe this response is not good enough.

They are the professionals and they should be trained in all areas of response; if the patient found the strength to seek help to begin with, this “go away and stop wasting my time” reply is appalling; or the comment “you are doing well” due to my husband finally telling them what they want to hear, knowing he couldn't dissolve the issues overnight.

As I'm not allowed to attend meetings it makes it harder for me to know and understand how to help him deal with the issues, when taking into account my overall involvement.

I am also addressing so much more than in a normal family situation as I maintain the situations with my Husband's other characteristics while he deals with being Illiterate, this being yet another stigma he must face in the public eye.

Refusing to give up and hoping that he can just move on, as so many in the past have stated he must “toughen up” and “get over it”.

Being a hands-on hard-working man all his adult life, proud of his work-ethics with any commitment he takes on, we are now at another stumbling block facing the economic issues where employment opportunities have dropped in our area and he repeatedly faces retrenchment notices every time we think we are gaining permanent employment.

With the reality that others see all this almost in a negative manner, he then tries to address his minimising self-esteem and belittled emotional worth, due to his belief he cannot suitably support his family.

While no-one remembers the years-upon-years of full-time permanent employment, viewing the 'now' moment as an “unemployed .........” the unmentionable description.

Coming back to A.J.'s school issue - I am pleased to report that it's being dealt with and the school hope for a positive resolution. After contacting his Head support teacher, I have already received two replies regarding the progress with a confirmation they are working through the situation and will report back with further progress.
You can't ask for a better response than that; especially as in the past our other school would respond with "that has been resolved" knowing full well it hadn't been dealt with in any decent manner. 

It now seems the days are passing all too quickly of late and without any spare time to finish off the set tasks and requirements for each day, it then becomes a struggle to find time for the added extras I need to address and the thought of a time-out moment all but a fleeting dream.

A.J. has recently faced the latest line-up of appointments, check-ups, and assessment review up-dates; we also arranged for a new report to correlate all his requirements onto one listing to better assist with the process for the NDIS application.

We have been lucky enough to be chosen as one of the first full roll-out areas, and as A.J. has never received any official support or assistance I am hoping to gain the much needed connections to additional help in areas we have been struggling to maintain as he gets older and it is more obvious to his requirements.

So getting back to the requirements of everyday life, we will continue on in the hopes that one day things will get easier.

Keeping a smile on my face and love in my heart, we try to keep a positive outlook at all times.

Happiness and Calm to all