Monday, July 15, 2013

Invisible Illnesses and Special Treatment

Two kinds of posts endlessly circulate on Facebook.  Both of them are quite whiny.  This one popped up yesterday and is representative of the Type 1 post, INVISIBLE ILLNESS and is presented with odd spellings and punctuation exactly as everyone else posts it:
"Ignorant people can be so cruel!! I'm posting this because recently I have been mocked and laughed at for things beyond my control... I have three of these illnesses as does some of my friends.... Not one of my Facebook friends will copy and paste (but I am counting on a true family member or friend to do it). If you would be there for me no matter what then copy and paste this. I'm doing this to prove a friend wrong that someone is always listening. I care. Hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness (IBS, Crohn's, PTSD, Anxiety, Arthritis, Cancer, Heart Disease, Bipolar, Depression, Diabetes, Lupus, Fibromyalgia, MS, AS, ME, , Epilepsy, hereditary angio edema , AUTISM, Borderline personality disorder, M.D.,D.D.D., CFS, Histiocytosis,O.D.D, A.D.H.D, RSD, PBC,RLS etc.) Never judge!
I would add Alzheimer's to that, as early stage AD is also "invisible" (honestly, what does that even MEAN)?
And then we get the Type 2 post, the I'm not special enough one:
So first you are complaining that you have an INVISIBLE disease (or your child does) and then you are complaining that your invisibly diseased child (or self) isn't getting special treatment?  Honestly it's one or the other.  If I see a kid screaming and losing it in public, I don't worry that the kid has an invisible disease, I assume the kid is a brat.
In my dad's early stages of Alzheimer's, he appeared perfectly normal and most of the time he acted that way.  We didn't say anything to anyone about his disease unless he started at act weird.  We didn't want people pitying him for no reason.  But once something kicked in and his behavior went a little sideways, we'd simply explain, "he has Alzheimer's" and most of the time people were understanding.  Is it embarrassing for your grown up father to throw a temper tantrum in a restaurant? Of course it is, and of course people stare, and what do we do?  Not get pissed off and passive aggressive toward those people--we removed my father from the situation.  We never expected anyone in public to simply "deal with" my dad in a full-blown Alzheimer's rage.  We also did not want anyone trying to "help" except if they were calling the police (although one time we asked someone to call the police and that person flat-out refused).
I guess I don't understand the combination of "invisible" diseases and the sense of entitlement it seems to entail.  If your disease is invisible, that means no one knows you have it (unless you are trumpeting it in every passive-aggressive status on FB), so why should anyone have to be "understanding" or "kind" to you?  Is your disease manifesting in some way that requires you to need special treatment? If so, it's not INVISIBLE. 
What I'm trying to say is, pick one.  Either you have something wrong with you and you need no special treatment, or you do need special treatment.  You can't have it both ways.  You can't also expect the general public to be able to diagnose your "invisible" disease at a glance and know if you need assistance and provide whatever it is you think you are entitled to.
I will always offer to hold the door for someone in a wheelchair or who is using a walker or cane (I was raised right, after all) or to help an elderly person put groceries into their trunk but I can't read your mind and know you can't open the door yourself because of your invisible disease and if you're going to get pissed at me because of that, that is your issue not mine. 
This weekend I had a party and my new friend came with her husband who is in a wheelchair.  We were able to easily rearrange things so he could be comfortable and yet still be part of the group.  I had food without wheat for my gluten intolerant friend, meat without salt for my friend who just had a stroke, grilled chicken for friends on high-protein diets.  Because I knew about these things in advance, it was simple to do. But if my friend had arrived with her wheelchair-bound husband with no warning and gotten angry that the party was up several steps on the deck, is that my fault or hers for not telling me her husband is handicapped? 


Christal said...

This is gorgeous!

Epoch Elder Care said...

Very touching blog article!!