My book.

My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Wednesday, October 17, 2012

SHARING (or not)

To share or not to share.   It is a strange dichotomy for me since my book is out and many people have read it; strangers know the most intimate details of my life.

In real life, with people standing in front of me, I am unsure about what to share.  Some of that comes from my life experience; a family that ridiculed and pooh pooed anytime I was ill.  It also comes out of the experience that many of us with chronic pain have, the veil of invisibility.  If we do not say "I am in  pain right now and cannot..." no one knows we are in pain and cannot act in a way  that feels understanding or accepting.

I mentioned this to a friend, I do not really know what to say and I am afraid to say it, expecting disdain, definitely non understadning.

My friend says to me, "Yes, you do give off the impression, do not ask me."  I get that.  I do not want it to be the main topic of conversation, I do not want to be seen as 'sick' or unable.  But when I am unable I have not opened the door to saying "I cannot right now."  I have also cut off a line of intimacy, of allowing someone into my life.  It is hard to complain of being alone when you may well  have set the ground rules for nothing else.

Many of us write in support groups, posts, blogs, about how bad the pain is, how hard today was, how they are mis and not understood.

Is it us?  It is easier to blame the pain, to blame others, then to look ourselves in the face and ask - "Is it me?  Am I setting the line in the sand that makes it feel it should not be crossed?  

It comes in two colors: talking about it too much so people do not want to talk to us after a while because it is all all pain or negativity or trying not to talk about it all so the other feels a wall that should not be breached.

I have yet to find a good middle ground.  Mine is the wall I think, no, I know - I do give out that vibe, "Don't ask."  I try to hide taking the pain pill, I withdraw even further when the pain is bad.  I do not give others a chance to show they do 'get it."  When they have shown me I get hot, embarrassed, uuncomfortable.  The vibe sent out is not 'thank you for understanding.  I am so appreciative of your empathy and letting me know you see the pain and my struggle."  It is more "Oh please let's not talk about such things."

Sometimes I write to talk to 'us' but also to talk to me and set myself straight.

I just wish I listened harder to my words.


  1. Hi there!

    I have a quick question about your blog! Please email me when you get a chance.


    1. Feel free to ask it here. Thanks Carol

  2. I totally understand how you feel, I am the same. I want people to understand I am feeling pain, but also to respect my feelings in talking about it. I cannot hide how I am, it cannot be swept under the carpet. So I have to talk about it, but yes NOT all the time. But I don't want them to just ignore it, that hurts me more as if they don't care.It is as you say, a hard middle ground to learn.
    That's what my blog is for, as you mention. It helps in a way to talk to myself, and hopefully helps others reading to either relate or understand someone they know going through similar pains.
    Great post :)

    1. Thanks.
      I am glad you can get help from your own blog posts. It is surprising sometimes how writing in the blog does sometimes turn into more journaling. ((*_*))

  3. It is so hard to find that balance. Especially when we want to seem strong and not as a burden. I have 2 people in my life (one family, one friend. Total.) and my friend kept telling me to express more openly to my family member how hard it is for me to do things, how much I struggle just visiting with them. But all I kept telling my friend, and myself, is that I didn't want my family member to worry about me or realize how far away I am, and will probably always be, from being "normal". It took me having to endure extreme pain (standing for 2 hours), for my family member to see what this pain is really doing to me. I was embarrassed. My mind couldn't think properly, I couldn't hide the pain on my face. And my secret was given up. Now that family member knows where I'm at physically, and that person makes comments about doing things for me because they know I must be in a lot of pain. I honestly wish they never found out, because although it needed to happen, I feel like my pain has robbed me of having a conversation with someone who doesn't have my pain level constantly in mind. I hope in the future I can get better at accepting and dealing with this. :/ Thank you for making me think about the situation more objectively. I am trying to accept that the people who are close to me will have to know about my pain. Sigh. Take care.

  4. As hard as it is if they are always looking at you thinking of your pain it is a good thing because it can be the starting point. Maybe you can talk with them and explain that you are glad they understand your limitations and level of pain but that you are much more then the pain.
    I have no family and one close friend who no longer lives near me. so I have never had that situation, actually I have mostly had the opposite of refusal to accept and believe, so it is a thought I have that hopefully might be something helpful for you.
    Thank you for reading and writing.
    You too. Carol