Writing through Pain

[SecretlyDisabled7]

I am a writer and now write mostly in the bed, propped up. I do travel as part of a way to earn a living and with pain management medications, I am able to do this even if I can't sit all day. In addition, I had a serious brain injury several years ago and a recent concussion late last year, making life more difficult. It is hard to organize around myself, the house, paperwork. And yet I can write with no difficulty. Perhaps it is because I have been doing it since long before illness or accident. If not for that brain and heart work, I think I would be more disabled. It helped, in part, to bring back my mind although speaking, I have difficulty with word recall and other, visual, problems.

My attitude is usually one of loving the world around me, the environment where I live, animals, and studying each living thing I encounter. I find this world a fascinating place to live. Although I can not do as much as I did, I still try to live with a disability that I want to hide from others. Their responses can bother me and so I try to keep conversation without my disabilities or pain. (Everyone has a solution, too.)

L H   Secretly Disabled7

[lupus-support1 Administrator]

This is a very moving post and I am glad you find writing to be a source of happiness and a resource that you can use.

I am interested in your need to hide your disability from other people as you describe how their responses bother you. This is a very private matter and I am conscious that this space may not be private enough.

To have to "hide" a part of who you are can be exhausting,  but it can also affect our "authenticity"? 

I know understand better why you refer to yourself as "SecretlyDisabled7," but the "7" is a mystery!

With good wishes,

Ros

[SecretlyDisabled7 in reply to lupus-support1]

Dear Ros,

I added the 7 in case someone else had the same name. And yes, I do find that writing helps so much. I would like to write about disability, but every time I do, it turns out to be terrible.

So, I have only some friends who know about my life, my inner world of pain and mental impairment. I keep it from others because they say Oh, I can relate, I have..... or something else that makes me realize it is futile to try to explain to them. So, unless I know someone well, I am private. If that makes sense to you, I would be glad. Outwardly it doesn't show that I am sick unless someone looks closely at my hands, etc. I do have people who come to me and say they notice. But they know someone with lupus. Also, I know the best makeup for hiding my facial rash. 

By the way, a great anthology is a book on disability called, Beauty is a Verb. and it has been inspiring for me, in wanting to write about what my life is like on a day to day reality.

Lin

[lupus-support1 Administrator in reply to SecretlyDisabled7]

Dear Lin,

I do understand the difference between sharing ourselves with close friends against others who might say they understand, but do not. The emotional effort can feel too great. 

Nevertheless, being able to confide in someone is very important.

What you are saying does make sense to me.

Do you have a space for your writing? I am wondering whether you like to share your writing with other people, as in a blog?

With good wishes,

Ros