Hope is a Journey….

But You Don’t Look Sick!

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:

2005 pics Sasha newborn will too 041

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,



Sasha pT

And an arsenal of heavy duty medications.

pills spilled

 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?







Daily Medications,

Will's Daily Medication

Will’s Daily Medication

Sasha's Daily Medication

Sasha’s Daily Medication

One Day of Meds for Both Kids

One Day of Meds for Both Kids

Weekly Infusions,

Sasha infusion

Assistive Devices,


Modified Activities,


Extra Rest,

sleeping soundly

Close Monitoring,


IMG_2429 486133_4676943875037_187540180_n

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.



2012-01-08_10-54-48_341 581080_3537932920475_1156619728_n



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,


Comments on: "But You Don’t Look Sick!" (6)

  1. wow – very well said!

  2. Thank you Stefani for sharing a journey so many of us are on, and so many more who don’t understand. Love to you and your family.

  3. Wow! Another, “right on the nose” – type of post. You do such a great job explaining issues. Of course, you are also an amazing mother and person. Kepp it up!

  4. Very well said, my daughter was the baby in the first picture and she “wasn’t sick” just tiny. So don’t just a book by its cover! Feel better kiddos!

  5. I have had so many people say this to my son but h doesn’t look sick. 30 years later we are lucky if he makes one month without seeing a doctor…. even family members that no of his illness and chronic problems, don’t see it nor care to see it. Thank you for sharing my thoughts and to let me know that I am not the only one who thinks this way. Everyone is to busy these days to take the time to really see, care, or just be a friend to listen. I am learning to be who I am to be there for those who need and want to share there hurts, pains, for they are the ones crying out for help. The ones that keep it all inside, want it this way and I will respect that they do, but when you beg for compassion and don’t get it, I am learning to find it where i can not where I can’t. For they are the judgemental.

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