I am blessed to have two grown daughters and a man I will call The Prince whom I have dated for more than six years now. Only one of my daughters can tell you the name of my illness, what my diagnosis are, and how these illness affect me. She is also the only one who has a clue what to do if I have a POTS episode. Ironically, she lives 300 miles away and is the person I see the least.
This is incredibly frustrating for me. I know without a doubt I am loved deeply by these people. After much pouting, stomping my feet and several private ( some not so private) pity parties, I have decided they simply can't cope with the reality of my illness or the limitations I have so they chose to ignore them. It makes their lives easier, and I know first hand how hard it is to watch someone you love suffer with an unremitting illness.
What I also have to recognize is the part I play in allowing this ridiculous charade to continue. It is a drag to be with someone who is sick, and even more of a drag to be the sick one. I don't want to complain because my mother did enough of that to last us all a lifetime, so I rarely talk about my illness to anyone other than my oldest daughter, who is the only one who truly acknowledges it.
I don't know the difference between complaining and explaining anymore.
I'm angry because I shouldn't have to explain the basics to the people who have been in my life for so many years.
I want someone to know what to do if I have an episode, better known here in the south as a "spell".
I want someone to acknowledge my limitations and occasionally remind me when I am pushing too hard.
I want someone to understand just how tired I am all the time.
I know it's hard to love someone who is sick.
It's also hard to be sick every day. All the time.
I know it's easier to pretend it will go away if we don't talk about it or make a joke about it.
For me it never ever goes away, not for a minute.
I know it's easier for you.
That doesn't mean it's easier for me.
This leaves me in the position of pretending nothing is wrong, which takes a tremendous amount of energy that I don't have to waste on this kind of BS. I have a fourth child to raise who is two and depends on me.
When I try to talk about my illness, I am met with blank stares, uncomfortable silences and a change of subject.
Sigh.
The literature I give gets thrown in the backseat of the car, where it is promptly forgotten about and never read.
I have to much damn pride to force feed information about myself to anyone.
So....back to square one, where we pretend everything is fine. I live alone, except for a two year old, so that makes it easier to hide all the messier, in your face aspects of a chronic illness.
I wish I knew how to stop feeling guilty about all the things I can no longer do.
I wish I could just figure it out.
The thing is, I love them too. And I understand they just aren't ready to hear what I need to say.
Maybe they never will be.
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