Sometimes telling people about my illnesses can be a double edged sword.
On one hand I get tired of people commenting that I don’t look ill or that I should be able to do x y or z because I look just fine to them. Many times I have to tell people that I am not well and that is why I cannot do or help or work on something or go somewhere.
Honestly, most times I say I am tired or just not able, since I look just fine. There are people who may be suffering form an acute situation who actually “look ill” while mine is chronic and I don’t. Sometimes, I am compared to them and just about everybody else.
In this situation I figure the best thing to do may be to explain what’s going on. Thing is I am not always ready for the reaction.
I don’ like pity but that’s what I get more often than not. “I’m so sorry for you” or ” that’s so sad” or ” oh my, that just makes me want to cry”.
The flip side of it is people treating my like I’m dying ….or dead……. because they know I am ill. I wrote about it in I’m not dead yet…..sheesh! at that point I was frustrated because I was constantly overlooked for the simplest things.
Those who know I am ill and how the illness impacts me sometimes make comments like ” I know you won’t be able to handle it so I didn’t bother to ask” or ” You too sick to do that anyway” or even ” that isn’t for you, you gotta be able”. These types of comments cut me to the core.
Its as if my inability to do today equates to my inability to do ever again. Its the same thing that has frustrated me for a while now; people making decisions for me. They don’t even get my opinion on the matter and most times I can’t do anything about it.
See, I don’t want to seem ungrateful for whatever help is offered but at the same time I have a brain and an opinion on matters. I would like to be heard.
Its either feeling sorry for me and throwing a pity party or treating me like I am not capable of even the smallest decision/ action.
So, what do I do? What should I do? In many cases I do what most of us with chronic and especially “invisible illnesses” do; I say nothing and go about my business. I never ask for help because I don’t want to appear weak and I have mastered the straight/ normal face even when I am in the most excruciating pain.
I live a double life. I present one image but underneath the truth is very different, yet, I don’t see any other option. I can find the middle ground between being pitied and being deemed helpless but I think its difficult for those around me. Invariably those who I let see the real me gravitate to one position or the other. There are even those who shift from one to the other and back again.
Its taxing beyond words to live my life……………..so I know and can appreciate how challenging it would be for those who love me and have to work or interact with me on some level.
Yet, this is how I feel.