This is a re-post, but it is very important to me. This is an issue people with chronic illnesses run into fairly frequently.
MPNs are “Invisible Illnesses”. There really are not many outward signs that show we’re sick, but boy do we feel it. I don’t know about the rest of you, but , no matter how I look, sometimes I feel like I’ve been run over by a truck.
However well-intended the phrase may be, saying “but you don’t LOOK sick…” to a sick person is pretty insulting. The implication being that we are faking it or that it’s not real. We don’t look sick? Well…what does sick look like, pray tell? Should we all be emaciated, bruised, or limping? What does it take to be acceptably sick? This may surprise some…but not all sick people look alike. Shocking, I’m sure. (insert snarky eye roll here).
We all have good days and bad, but for the Invisibly Ill, the bad days often outnumber the good. Most of us, though are obliged to put on the happy face and get on with things. If we didn’t, we wouldn’t be able get much done. I often feel like I am two completely different people; the one on the outside, who looks just fine, and deceives everyone around her; and the one on the inside who is exhausted, and battered and miserable.
I learned to put on the happy face real quick when I got my first “Grown-Up Job”. I started at my office as the receptionist, so putting on the perky, bubbly personality, however fake it may have been, became a part of my daily life. Fatigued, sick, headache? Didn’t matter. That smile was plastered on. Inside I might have been cursing the phone for ringing, but I’d still thank you for calling and inquire how I could help. If you didn’t know I was sick…you would not know. There are days though when I just can’t fake it anymore, my fatigue catches up with me and knocks me out. On those days, I tend to hear that dreaded “but you don’t LOOK sick…”. Also on those days my sarcastic side will often think(or sometimes say, depending on the audience) “And you don’t LOOK like a jerk..but I guess appearances can be deceiving, can’t they?”
Believe me, I am neither wanting nor expecting sympathy. Understanding would be wonderful though. Yes, it’s true that we don’t fit the picture in most people’s heads of what sick should look like, but trust me while these illnesses may be invisible, we and our pain certainly are not.
Please, think twice before telling us we don’t fit your image.
Until tomorrow,
Lina
The Life of a Vaguely Neurotic MPN Patient 
Thank you for posting your blogs, there truly is a comfort in knowing your not alone. I was diagnosed with ET at 19 ( nearly 20 years ago now) at the time when I heard those words ” you don’t look sick” I could understand, because not only did I not look it, I never used to feel it!! Long gone are those days, now my body gives me constant reminders that I am sick. Like you I am very familiar with the “Truck “effect, the twin personalities and slapping on the happy face. So much so however that even my nearest and dearest (partner of 7 years) says to me. ” I forget that your sick”
How so, I wonder as I pop a dozen pills a day and inject with interferon fortnightly!!
I generally try not to complain, although this has become harder of recent as I feel so bad, but as you said, I tend to get the impression that people think I am exaggerating.
There does generally seem to be a lack of understanding for invisible illnesses partially because of the obvious – If you are not missing a limb or don’t show signs of obvious impairment people tend to make judgement’s that are usually wrong!! additionally I think its down to a lack of understanding of rare illnesses.
For me, I don’t think the people around me understand the gravity of ET. I was diagnosed before MPD’s where classified as neoplasm’s and so I had always described my illness as a blood disorder.
It hasn’t been until recent that it has actually dawned on me that I actually have a blood cancer and now i’m finding it difficult to explain to those around me.
Like you I’m not asking for sympathy, although a shoulder to cry on, occasionally would be nice, but most of all I would like people to stop taking things at face value, the old saying is not to judge a book by its cover, if we all thought, before we spoke and learnt to be kind to our fellow human beings, then MPD or not – the world would be a nicer place
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Hey, Chari! Thanks for reading! You’re absolutely right, it’s really nice knowing that we’re not alone. I’m here if you ever need a shoulder 🙂
Talk to you soon,
Lina
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