I know I do occasionally and my hope is when I go back and look I don't see that I've swamped this blog with thoughts on illness. My hope is to share some of my insight and thoughts and eventually my grandchildren will come to find them and know what I thought deep down inside.
I think that when one looks "O.K." on the outside, people that don't know them assume they are fine. I can understand that. These people do not know you, so they presume by the packaging, that you are fine. This often becomes an issue in the case of handicapped parking spots.
People see someone exit a vehicle in a handicapped spot and if they are not limping, using a cane or weaving all over it seems the negative thought of..."Hmmmph, what a lazy son of a pup that person is...nothing is wrong with them," takes hold when the reality is that their disease causes fatigue you can't understand until you've hit that wall so hard you know you have to go to bed NOW or pass out. You never know...it could be internal trauma of some sort, really a myriad of things.
It is a case of ... the packaging looks fine but the goods are damaged.
I've received packages from UPS that had glass items as their content. The package on the outside looked like it was unscathed, but the contents were a mash up of broken glass and sharp edges.
That people that know and profess to love you see you as slightly flawed, but how bad can it be (?) makes me sad. You still look normal to them and because your illness has been going on for years, and you still look the same outside, they negate what you deal with. This is sometimes hurtful and sometimes sadly amusing.
I think too, that I'd have to say there is a form of aggravation that one feels toward these people. Do we want them weeping and gnashing their teeth over our condition, no. But when you have a bad day and it is blown off as if you have had the flu and will get over it, it does cause aggravation in me. I know it does my fellow chronic/progressive/no-cure disease sufferers. How do I know this? I know this because on many of my support groups it is OFTEN a topic of conversation. Most feel it is as if these people who aver that they love you get so used to you being unwell that when you progress they just see it as a flair or something you'll eventually get over. What do we want or expect from those that live with us, or are near and dear to us?
1. We want them to allow us to feel bad and say so. I don't care if I've said it 10 times before. If you think of all the times I feel horrible, but never say, when I DO say, that is a signal to the people that love me, that it is quite a bad day.
2. We don't want you to answer our problems and ills for us. We want a little empathy, or a simple "that sucks." That's all.
3. We want you to know that we aren't going to miraculously wake up, as if the day after a 24 hour virus and be ok. It "ain't" gonna happen.
It is as simple as that.
So I'd like to point out something to anyone who may, down the pike read this.
Much like the glass that was demolished in that very sturdy, "O.K." looking shipping container, we who suffer from disease that is chronic/progressive and has no cure (and some of us deal with several of these at the same time) are the same. Sturdy and "O.K." looking on the outside but filled with hurtful things, damaged things within.
So to my darling Left Brain...thank you for understanding me best. Thank you for understanding that I work VERY hard to appear like I feel normal when I feel anything but. Thank you for reminding me when you think I am overdoing it, and most of all...thank you for never negating the ugly parts. Just saying "I know, and sweetheart I'm sorry," is more often than not...just the ticket.
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