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Monday, September 10, 2012


I never thought a political debate online would lead to a post but I had a revelation the other day when someone who disagreed with me, after name-calling and using profanity told me, "I see you on facebook so obviously you are not disabled.  You should be working."


This person, whom I knew slightly in high school, knew me now only through my facebook postings.  He may have read some of my blog posts but has no day to day knowledge of me; and most probably about the history of my pain and where I am now with it.

"I see you on facebook all the time." (all the time? Funny, since I am not on it 'all the time')   It took me back to the words of my father, whose insisted on his disbelief in the pain no matter the proof from the doctors.  "I have seen you read so I know you can." 

Yes I still read.   I have to take narcotics to do it.  15 - 20 minutes, if I read or use my eyes consistently, causes such horrific pain that I become nauseated and have to stop using my eyes, sometimes for up to 1 -2 hours.  To not use my eyes means doing nothing: even eating, cooking, little things, requires eye movement so I am down for the count if I push it (which I too often do).

It reminds me of others who write, in support groups, or to me personally, or on their own blogs, my (        ) does not believe I really have pain, or that it is 'really' that bad.  When they write this it is often accompanied then and there, or in other comments at some point, by information that the person who said it does not like them, or is angry with them, or is someone with whom they have a bad relationship.

If you read me a lot you know that I tend to go to cancer as my analogy:rarely, if ever, do people say, in a fit of pique or anger, or disdain, "You do not have cancer, I know you are healthy."
Would he have written that to me, "I am against your political position, what you say is (&%$%  and you are not disabled (sick with cancer). You should be working."  No.  I truly doube it would even have occurred to him.

Maybe, these words,  "You are not really in pain" needs to be seen as a cry for help from the person who is using them, as a sign of their need to cut to the quick.  They want to hurt the other person and going after the invisible illness, the disorder that often just relies on the statement "I am in pain" is the 'best' insult they can find.

It does hurt, it is bad enough to be in pain without having to deal with not only the disbelivers but those who want to use it to add hurt, but we also need to keep it in context, of remembering who said the words and what their intent was.  It is hard to  not feel the cut of the words: but the best thing we can do, when it happens, is look at it for the trash that it is, mentally squish it into a ball and throw it out into the universe, letting it become the nothing that it should always have been.


  1. Gosh, do I know this one.. and, what's with THAT? I'm "ate up" with tumors (hundreds of them) none are cancerous but, I have the same pain and am under treated for that pain because it isn't "cancer?" Additionally? There's no cure, treatment or alternative.. (now, add migraines, ocular pressure, spondylosis, cervical bone spurs -plus many others..) The doc's are so quick to dole out anti-depressant's or some other mind altering drug which has no efficacy or the mechanisms or unknown with lethal "side-affects!" I'm a U.S. Veteran and I've pretty much been told, by the VA medical hospital: "oh, apply for a grant to MD Anderson! They may help you!" WHAT? Are they joking? Not to mention, it's an act of congress and an inquisition if I call in to have my meds refilled 2 days before they're due; which I do because it takes up to 10 days for them to arrive by mail, meaning - I go up to a week without pain med's once every three months IF it has been a mild/moderate time of pain! Anyway, I completely "feel" your "pain!" Warmest wishes to you in a season of a cold medical winter!!! Rob Russo, (over-pained, under-medicated!!!)

  2. Hi Rob, I am so sorry for your pain and the troubles that you are having getting what you need. Even in the civilian community the DEA, and now the FDA, are making it harder for all pain patients who are on nacotics to get their meds. It is not right that you should be without pain meds, for at all never mind the week that you do every 2 months. Have you written to your congressperson? Sometimes they can help deal with the red tape.
    Thank you also for your military service. I have friends who have been in the military and I know from them how hard a life it is.
    Im glad you found my blog.
    I have a group Women In Pain Awareness, for men and women in pain. It is a somewhat quiet group but we have some very good and supportive folks in it. In case you would like to check us out:!/groups/111961795481256/