Show Your Hope!

Ahhhh…..the dreaded 5 words that anyone with a serious or chronic illness hates to hear:  “But You Don’t Look Sick!“

Sad but true, perception often is reality and we judge reality by the way things ‘look‘ – and, until you’ve had to LIVE with a chronic or serious illness….this may be how you operate.

To most, sick looks like this:

And healthy looks like this:

And, often…this is the case.

But what about those who LIVE with illnesses that are invisible and have learned to cope with most of the day to day struggles to the point of making ‘sick’ look ‘healthy’?

What about those who have silent battles raging on inside of them at a level that the naked eye can not behold?

What about those who are great pretenders…who live their life putting on a brave face, a shining smile, and never let the world know how tough it really is inside their skin?

Yes…there are those who are indeed living with serious illness who look amazing….

Thanks to constant medical interventions,

Numerous appointments,

Therapies,

And an arsenal of heavy duty medications.

 2 years ago I was sitting in the ER at Mass General Hospital having some serious cardiac issues – they were overflowing with patients, there weren’t enough beds and they had run out of cardiac monitors.  The nurse (trying to be reassuring to me) said that she had to still dig up a cardiac monitor for me and 2 other patients…but that she wasn’t too concerned about me – because I didn’t ‘look sick.‘

I asked her exactly what ‘sick‘ is supposed to look like and told her I’d try to meet her expectations next time she walked by.  I then explained to her that my ‘sick‘ is at a cellular level, and – unless she had some secret magical microscope built into her eyes, she had no idea how ‘sick‘ I was.

I then made a phone call to my metabolic specialist – who called down to the ER and explained my situation to them…and I was transferred up to a room within an hour.  Indeed, I was SICK, fancy that.

I can’t even tell you how many times I’ve been told, “You look so young and healthy” and my response is always, “Tell that to my Mitochondria.“

When I am out with Ralph and my two children, people always say, “They look so healthy!“

And, you know what….they are right.

Do you know what it takes to keep my kids ‘looking healthy?‘

Appointments,

Therapy,

Daily Medications,

Weekly Infusions,

Assistive Devices,

Modified Activities,

Extra Rest,

Close Monitoring,

And…the newest addition to our list…removal from school to prevent exposure to illness as much as possible.

I’ll be honest, sometimes – no matter what you do – no matter how hard you try…there are times when we  ‘look sick’ and there’s no mistaking it.

 

But, remember to try not to judge a book by its cover…

Because contained within the pages of that book can be a lifetime of struggle, battle, procedures, failures, and a medical journey that you may never have anticipated.

Love and Light,

Stefani