Thursday, January 23, 2014

What does sick look like?

There is a lot of discussion regarding people who are chronically ill "looking" sick.  People who aren't sick tell us that we don't look sick all the time.  I hear from people with POTS/dysautonomia, mitochondrial disease, and others who're disabled from different medical problems that they have heard that statement.  We get looks when parking in handicapped parking.  We have problems getting disability.  We have difficulty getting support from family and friends.

That leads me to one question...

What, exactly, does sick look like? 

This is my favorite
Does someone with diabetes look sick?  They have a lot to deal with everyday.  If they don't take their insulin at the right time, eat the right foods, take too much insulin, take too little insulin, exercise too much, etc. they can wind up in the hospital.  But by looking at someone with diabetes, can you tell?  They may have an insulin pump or scars from all of the needle sticks but you can't see those things if they're dressed.  Are they sick?

Does someone with congestive heart failure (CHF) look sick?  They get short of breath with activity and can have swelling in their legs and feet. They could go into the hospital at any minute. But by looking at someone with CHF, can you tell?  While clothed you can't see the swelling and you can't "see" shortness of breath.  Are they sick?

What about Multiple Sclerosis?  People with MS can have a wide array of symptoms, many of which occur in mito as well.  They, many times, have to use a wheelchair to get around.  But, without the wheelchair (or even with the w/c), can you tell?  Can you see the pain, numbness, and tingling?  Can you see the bowel and bladder problems?  The muscle weakness?  Are they sick?

And how about Mitochondrial Disease?  People with mito have a wide array of symptoms, just like those with MS.  We have extreme fatigue, muscle weakness and pain (many times severe), slow or no GI motility (movement), problems with vision or hearing, failure of the autonomic nervous system (which causes a wide array of symptoms itself), and many more.  Many of us have to use a wheelchair to get around, at least if we want to get very far we do. (I'm included in that group.)

...and a lot of alcohol and some acting
classes and I'll be sick for the next
2 days.
Due to my illness I have a port a cath for IV fluids and an intrathecal pain pump implanted in my back, both of which stick out and are visible when I don't have a shirt on. I have a scar of my leg from the muscle biopsy, two large ones on my back from the pain pump, and a small one above the port.  I also use a wheelchair to get around. In addition to all of that, many people with mito have a G/J tube (feeding tube).  Aside from the wheelchair, none of those things can be seen with my clothes on.  Anyone with Mitochondrial Disease could get ill and be in the hospital any minute.  But by looking at someone with mito, can you tell?  (Evidently not since I've been told many times that I don't look sick, despite using a wheelchair.)  Are we sick?

So, if none of the people with diseases mentioned above look sick, what exactly does sick look like?  If you're sick does that mean you always look pale?  Do you have to be missing your hair?  Do your eyes have to be sunken in with dark circles underneath?  Do you have to be emaciated?  Do sick people have to frown and look miserable ALL the time?  Do you have to be so sick that you can't get out of bed 100% of the time?

I've felt this way before.
If the answers to those questions are all "yes", then that means that you're only sick if you are actively dying or going through severe chemo and radiation due to stage 4 cancer.  If neither of those are true, then you must not be sick because you don't look that way.

Everyone needs to learn that it is almost insulting to say "You don't look sick" to someone who is sick and feels sick every day of the week.

And in case you need a reminder of the other things not to say to someone with a chronic illness...

You'd be surprised how many times I've heard these statements or something similar.

Sorry for all the pictures... I just couldn't choose.  :-)

1 comment:

Awnyah said...

A brill blog. A true look to being very sick and the reality of insensitity with words, responses or empathy. It would be true "care to walk a mile in my moccasins" isn't that the saying?