Introduction - before I hit “send” on a comment, I decided it was too lengthy to do as a comment so I made it into its own post. If our moderators can do it, I would love to have a link to the post, “Just an Update” - and read the comments too - a lot of wisdom.
My comment was originally in response to part of that thread that dealt with the complexities of having a chronic illness that is rarely visible. If we walked past each other in a shopping mall, the only way you would know I had something “wrong” is the bump above my collarbone.
Here goes…
On the invisibility cloak that we’ve pretty much all been “given” (that sounds like too positive of a word.) I try, and rarely succeed, at looking at it this way:
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The vast majority of the people I meet wont know me well enough to really be valuable friends in something like this. If they dont know me well enough, then they dont need to know the details.
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I’m spared the pity eyes as I call them. You know what I mean, “oh you poor thing, I feel so bad for you…” I dont get those from a lot of people because, walking into the auto parts place, other than a big bump near my collar bone and my left shoulder sags about 3 inches, I look normal. That’s a control that I have when they cant see it.
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you also get to control how much of the story, your story, you share and with whom you share it. I dont need to share with my nephews that there have been times in the last two years where I questioned, “How in the heck am I going to live another 30 years with this blasted noise in my head?” And then remembering when a counselor came to my kids school when one of the students killed herself and she said something that will stick with me forever, “suicide victims dont want to die, they just want the pain to stop.” I know what they mean now.
The only place I feel I can share that are my wife, “my Randy,” my pastor, my primary care doctor and you all. And since its not visible, I can control that.
My mom is 82 and my Dad died a year and a half ago. She has aged close to 10 years in the last two years. She keeps trying to fix me, she sat next to me in church and said she thought my voice sounded very good singing. That’s her way of trying to make it al better. I told her it was for the first two songs, then I couldn’t sing more than 4 notes and I’d be out of breath and those four notes would quite out of tune. “Oh, I didnt notice that.”
If she wasn’t family, she probably wouldn’t have noticed and those conversations wouldn’t have happened.
Being invisible is a blessing sometimes, but it does limit the amount of support you get because there are people who would pray, help do something that dont because they dont know.
I was originally going to do this as a comment on the “just an update” post (can one of our dear moderators put the link in?) and decided to make it a separate post because I rambled a bit extensively.
More later,
TJ
