A Pained Life: All in a Day’s Work

A Pained Life: All in a Day’s Work

“You are so lucky. I wish I didn’t have to work!”

“To be able to stay home all day long! You really have it made.”

Wouldn’t it be nice if that was the truth?  I would give anything to be able to work.

640px-Waitress_taking_an_orderMany years ago I was a waitress. For a day.

My trigeminal neuralgia caused constant pain in the left side of my face. A simple touch would trigger spontaneous pain. The biggest problem was my left eye. It could not tolerate sustained usage or movement without horrific pain.

I hoped the breaks between customers and waiting tables would allow me to rest my eye and give the pain a chance to recede. Instead, I rushed from table to table without a break in either the work or the pain. I swallowed codeine upon codeine, trying to catch up with the pain. I prayed for relief that never came.

I gave notice to the manager as soon as he put up the “closed” sign. I walked home in horrific pain, not only in physical pain, but from the realization that deciding to work did not automatically mean that I could.

I tried to sell shoes. The store sold only to men. They usually arrived knowing exactly the size and style of shoe they wanted. All I had to do was go in the backroom and fetch the shoebox. I did not even have to do the cash register. It was wonderful. I was working. Because of the slow pace, my eye and the pain pretty much behaved itself.

Then they transferred me to another store and insisted I do the cash register. That took care of that. The pain forced me to quit.

When I was working, before the pain started, I had a number of jobs. My favorite one was as a ward clerk in an emergency room. It was a weekend job, for over 4 years while I was in college. It helped me financially, but even more important, it gave me a sense of belonging.

Not being able to work and people saying they are jealous, reminds me of the days when it was said stay-at-home moms had it easy. Their main “job” was watching TV and eating bon-bons.

Ultimately, people came to understand that it was work, and hard work at that, to stay home, raise children, and keep a house.

It is work being disabled. It is work fighting the pain. Those of us in pain struggle; through treatments, doctors’ appointments, surgeries, therapy, and disbelief from friends, families and colleagues when we can work. Sometimes even doctors and other medical professionals.

I know work can be frustrating, and often the job is not the one we want or harder or more boring or soul stealing then we ever imagined. But I would love to have one of those jobs.

At the end of the day, if and when those who feel envy for our life of “ease” think it through, they would not trade places with us. Not even for a million dollars.

But I would trade places with them in a millisecond.

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

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 represents 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.

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Authored by: Carol Levy, Columnist

There are 6 comments for this article
  1. Katie May at 7:42 pm

    I have been on disability for around 3 – 4 years. But it’s only been in the last 6 months or so that I’ve been suffering debilitating pain. And the wonderful lady who wrote this article is so right; most people do not “get it,” nor do they even try to get it. Instead, in my case, anyway, certain people tend to judge me for being on disability. That would be most of the people in my family–esp. a sister of mine that I long to be close to, but who has been pushing me away for years. During one of the few times I was allowed to enjoy a meal with her and her family, she threw in a remark about “all those people on disability who don’t need it”…and how they wreck it for those people that really need to be on disability. I knew right away she was referring to me. But I digress. Like I started to say, I’ve been in unbearable pain for around 6 months due to several bulging disks in my neck and back. I’ve had physical therapy, steroid injections in my back (the steroids caused quite a few undesirable side effects that I will spare the reader from having to read), a medial block and a thermal radial ablasion that I recently had. None of these things has done anything to alleviate my pain (the ablasion has actually made my pain much worse), so now my docs are talking about major spinal surgery being in my immediate future. That’s one thing, but the thing I’m most concerned about is becoming addicted to the pain meds that I HAVE to take to be able to barely get through the day. I, like so many here, have a “catch 22”; I am in genuine and severe pain so I need the meds, but I do not want to become addicted. What a quagmire! Anyway, it’s at least nice to know there are others out there that get it, and aren’t out to judge me for presumably “taking advantage of the system” (being on SSDI for very legitimate reasons).

    Thanks for letting me share!

  2. Pain patient advocate at 4:46 pm

    Your article here Carol is very true and thank you for bringing more awareness to pain sufferers.
    So many people with pain would be able to work for more years before completely quitting, if ONLY their pharmacies would fill their legal medications before they run out of them in time. Some get sick and suffer even more increased severe pain having to wait a week or more for their pain medicines to be filled because no will fill them at all. Worse than that, Media and politicians created a prescription epidemic which caused hysteria and such negatively with citizens that doctors are now afraid to write for needed amounts of medications because of the DEA. So many people are going on SS disability now because of this and others are just sick of it all and taking their own lives.
    As for those pain patients with really severe pain conditions who couldn’t work if they wanted, I feel truly sorry for them too because they are having many of the same problems as all other pain patients with medicine and care..

  3. LarryK at 1:50 pm

    I can’t count the number of unaware that said just about the same to me when I was medically retired from the Air Force. “You are so lucky! You get full retirement, and don’t have to work anymore!” That was the usual line. Others look at me and don’t see the pain underneath it all. I’m very good at hiding it. They condescend to me, mostly when I’m not there. They complain to my wife, “Why doesn’t he just get a job? I see him do other things.” What they don’t see is the painful tradeoff that I pay for doing those few things. Luckily, my wife sticks up for me. She doesn’t fully understand how the pain works. Hell, I don’t either. However, she tries.

    Our problem is that of perception. As much as human beings try, we can’t get away from judging others from site alone. Once that judgement is made, it is difficult to undo. They also have the feds telling everyone that those on pain meds are all abusing them.

  4. Myron Shank, M.D., Ph.D. at 12:35 pm

    Those that are harsh toward pain sufferers and conscientious physicians should read this.

    (Unfortunately, however, legislatures and state medical boards already ignore all of the other scientific evidence, medical opinions and standards of care, medical chart evidence, and even laws and regulations, in an effort to “get” physicians and pain patients, so they are unlikely to be touched by your story.).