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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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Tuesday, November 13, 2012


Recently the Minister talked in her sermon about the family, the community that we had in the church.

I told her that has not been my experience.  She replied "You told me that already."

I went on to say "Especially with the holidays and my having no one, it feels even moreso."

There was more to the conversation but her remark, "you told me that already." started me thinking.  It was dismissive, of me, of my feelings.  (I don't think she realized it; this is not a 'smite down the minister post.').

Maybe aloneness, and lonliness, are not be all that distinct from chronic pain; both are invisible, subjective, and foreign to the experiences of most people.

You say "I am in (physical) pain."  You will be believed, at least at first.

You say "I am alone."  You may not have family, because they are far away, or deceased.  Maybe it is a new city, you have not had the chance to make friends.

Three months later you say "I am still in pain."  The looks become one of suspicion.  "Really?  It has been three months already."  Six months and the questions, and disbelief, start.  Years, even decades later, the disbelief often remains, friends and family gone by the wayside, we preferring not to remain with people who doubt the shaky waters on which we now live, they maybe deciding to abandon us first.

You say you are alone, only now it is months, years, maybe decades.  The questions come, the above notwithstanding.  "What did you do to make your family turn on you?"  Despite my explanations, no rhyme or reason, a friend still said "Well, you had to have done something."  No.  It is freudian, but it is always easier to believe that people don't behave that way, without some reason.

"Why don't you have friends?"  I know some of the reasons.  I moved to a new state right before the pain started.  I became virtually housebound, only able to go out for doctor's appointments, groceries, the bank.  You cannot make friends if you rarely can leave your apartment or are in such horrific pain that it consumes you.

The first surgery worked.  Completely.  I got a job as soon as I was able and immediately made 2 friends.  We had a lot in common and just plain liked each other. Three months later the pain came back.  I was completely disabled by it again.  The friendship evaporated, not having been alive long enough to sustain what the pain did to me and my ability to be 'a part of'.

Other friendships,  most often one at a time, started primarily from proximity, and often equal instance of need rather then commonalities and like.  They grew into like but over time the end of need became overshadowed by the awareness that need was what had kept us together and was no longer there, (irony at its best).

My last major friendship is still alive but she now lives 5  hours away.  Phone is good but seeing, feeling, and being with is so vital to life, and so lacking in mine.

I have mentioned my nephew who bucked the family and on his own sought me out.  He lives many states away.  I am so very grateful to have him in my life but the lack, again, of someone to touch, see, feel is very hard to bear.

A reader of the blog asked how I cope with the heartbreak and marginalization of and by family.

My coping mechanism is not a healthy one.  I try to deny it until something like the holidays come and then it hits me, hard, in my heart and in my soul.

Some people find they have lost family because their siblings and others do not want to deal with the constancy of the pain, and disability.  Having pain makes them different, hard to fathom, accept, or believe.

In my case the pain has (had) nothing to do with it.  I do not understand how siblings with whom one grew up, no matter what the relationship, can turn their backs on a disabled family member, can look the other way as they embark on brain surgery 1,2, and on through number 12.  How they still see it as a fake and laziness.  It is hard not to try and look for an answer, the answer, but sometimes that is the healthiest response.  To accept that sometimes there is no answer.

The sad fact is that even when the relationships were good there is something about pain that can turn you into a pariah rather then the beloved sister,brother, aunt, mother, etc, you once were.

I wish I had the answers as to why, and how to overcome, the splitting off, of being cast aside..

I think being unable to partake in life, for me not being able to work, be where I can make my own family, is not an answer but at least an explanation.  If the family into which we were born deserts us, if our friends walk away, we have to find new ways to replace them.  Hopefully church, a workplace, a community center, school, or other places where folks congregate can lead us to the people who will embrace us and who we are, foibles, pain and all.  And we can be there to embrace them as well.


  1. amazing. just... horrible and painfully true.

    1. I hope this is not your experience or if it is you can find some people to be in your life.
      Thank you for reading and taking the time to comment.

  2. I have experienced the weird, awkward silence that tells me the other person is thinking "Why are you still in pain?" After I told my company that I had a grade 4 tear in my L4/L5 disc (ruptured disc with fluid leaking) and that one of my doctors (pain management) referred me to a surgeon, they expected that a surgery would fix me. I was days away from a fusion when during a preop test, they found I had an abnormal EKG and wanted me to do a chemical stress test. I was nervous about the test but did it. That evening my chest started hurting, my heart started racing, and I started sweating (up until then I had never experienced sweat rolling down my face when I had not been doing anything but sitting down watching TV). It was the beginning of a very long roller coaster ride of ER visits and specialists only be to diagnosed with panic attacks. Of course it scared me enough to cancel surgery. So here I sit, 7 months later, my back is worse even though I have had multiple epidural steroid injections (cause of some of the problems?), facet blocks, and sacroiliac injections. I have no official fibro dx, but the chiropractor I was seeing told me I was "positive" for all the trigger points. It was the first time anyone had told me this. My pain doctor said "probably" when I asked him, but then he retired.

    I have supportive family on my husbands side, as well as my mother who also has fibromyalgia, but even someone in husbands family suggested things like "you need to walk laps around your house to exercise if you cant get outside." What they dont understand is I HURT and can barely make it to my office in the morning! I am blessed to work from home. I still work 8-5 (usually later) and it kills my back. Pain meds do not kill the pain. It's like taking a nail and a hammer, and hammering into my back, versus when I take pain meds, replace the nail with a rock, or block of wood. Not so sharp but painful nonetheless.

    This post just rang so true to me that I went off into my own story! :-) I'm just so glad to have found your blog and to find commonality out in the interwebs! I do not have any friends who live close but do have a best friend who I speak to or text daily.

    1. I am so sorry that you had to go thorugh all that and you are still in pain. I am glad that you do have family that supports you but too many times people think that not being able to do one thing, for instance walk outside, means that it is doable somewhere else.
      Are you seeing a pain specialist? If not they may have some other ideas that might help you.
      Thank you for sharing.
      I am the same with the friends not here but phone or the internet.
      I am glad you found it too.