I have had chronic pain since I was a young woman. From the beginning, I was told it was “all in my head.”
I am now 53, living on social security disability, and I still don’t have a comprehensive diagnosis.
It would take several paragraphs to write about all of the really stupid diagnosis I have had, many gender specific, like “hysterical.” I did not know they even used that word any more. Yet a doctor had the audacity to tell me that my ruptured disc and nerve damage to my leg, which was nearly paralyzed, was caused by “hysteria.”
Can you imagine the kind of self-control it took me, to sit there in pain and listen to this ignorant garbage? A man would have just punched him!
I have coccydynia, on top of 2 spinal surgeries. The broken tailbone happened in childhood, yet it was only diagnosed this year. It is very painful. I was also told that was in my head, but now I have the x-ray to prove it isn’t.
I had to drop out of college and could no longer work, all the while being told I had psychological problems, even after numerous tests, MRIs etc. They all show a correlating picture of my pain issue, but I am still not believed.
I walk normally till I get tired. I have nerve damage, caused by a ruptured disk, and collapsing vertebrae. This was initially diagnosed as stress.
Even now I am not receiving any comprehensive care. I have nerve ablation and steroid injections in my spine every 4 months, but it is not enough to keep up with the number of issues I have. I have scar tissue from a botched surgery, which I was also told was a psychological problem. Medicare won’t pay for surgery to remove the scar tissue, so I have to live with the pain.
I cannot roll over in bed or do basic housework without pain. I cannot enjoy a movie or a meal in a restaurant, because of my broken tailbone. I can’t do basic things and feel helpless and useless. I have lost everything. I did well in college and loved it, yet I could not finish my degree, due to incompetent doctors and misdiagnosis.
I don’t look sick. I do yoga and stretches to keep the pain and muscle spasms at bay. I don’t look like there is anything wrong with me. I worked hard to get my gait back, to walk normally, but it takes extra work.
I do have a kind and decent pain management physician (thank heavens, it took years to find him), but I am limited by Medicare and he is one of the few pain physicians in the area.
I do not enjoy collecting social security and living in poverty. I tried working, but my request for an ergonomic desk was too much. I got treated with ridicule asking for some basic cheap accommodations.
It is a psychological kick in the teeth, when you are told the pain is in your head. When you wait six months for a referral, only to find a doctor who has not even bothered to look at my imaging, and then makes snide comments about psychological issues.
They don’t look into the reasons, the hopelessness, the invalidation, the ignorant comments we put up with, and the ongoing fear of more pain, or of no help. The DEA has all but made chronic pain a crime. More and more patients are being funneled to fewer doctors and those doctors are under scrutiny by the DEA.
They sensationalized the OxyContin scare, making ignorant people believe it was a scourge. Instead of questioning why there are so many addicts in our society and doing something about it, they targeted legitimate pain patients that need these medications to function. They have been on a witch hunt going after good compassionate doctors.
Pain patients live in fear every day. Fear the pain will get worse, fear that the medication they take will be taken away, fear of losing more than they already have.
I have no social life anymore. Doing basic things that I once took for granted are now daunting tasks. If I overdo an activity, I will spend the next two days on the couch recuperating.
I don’t want to drop out of life completely. I can’t let the pain win! Yet I have nowhere to turn, my pain doctor is an hour away and always overbooked. I cannot go to the ER, where I would be treated like a crazy person and ignored, or called a drug seeker and threatened with jail. I have to ride it out by myself, with my heating pad and TENs unit. I have to hope the pain stops.
There is so much ignorance and false information out there. It doesn’t appear that things are getting better, they are getting worse. Everything is our fault! If we speak up, we are labeled troublemakers or drug addicts. If we are unemotional and stoic, then we must not be in pain.
We can’t win.
Kathy Cooper lives in Santa Fe, New Mexico.
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The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.