A Day In The Life…

I came across this brilliant post today on creakyjoints.org. It really sums up the differences in daily life between healthy people and those of us dealing with chronic illness.

https://www.creakyjoints.org/so-what-does-someone-with-severe-rheumatoid-arthritis-do-all-day/

Thanks to Arthritic Chick for a great post. Hope you all enjoy! 

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Pain, Opioid Addiction, and Cake

Poster from the movie Cake: www.cakemovie.net

Poster from the movie Cake: http://www.cakemovie.net

NOTE: This post discusses a movie that is not yet available in wide release. I have not had the opportunity to see it, though I have done significant research on its content.

Jennifer Aniston is racking up praise, and awards nominations, for her role in “Cake“. In the new movie, Aniston plays Claire Simmons, a chronic pain sufferer. That part of her character excites me, as it sheds light on the challenges of managing everyday life with unending pain. Unless you live with it, it’s impossible to imagine how pain touches every moment of every day, and this part of the movie will be eye-opening for many. Watching the trailer and seeing her character struggle, I keep thinking “I’ve been there”.

However, Claire is also addicted to the prescription narcotics she uses to manage her pain. By all accounts, her performance is admirable. Still, as a daily Percocet user, I cringe at the thought of once again being represented in the media as a drug addict.

Before I go further, let me state very clearly that I understand the perils of drug addiction.  According to recent studies, more than 2 million Americans are addicted to prescription opioid painkillers, and the number of deaths from these drugs has quadrupled over the past 15 years. It is a serious issue, and one that deserves attention. The problem is complex, and overprescribing is one of the causes. If you need help, I urge you to seek it here. Please.

Media is all over this epidemic, and “Cake” is just the most recent example. A running theme in “House” is the main character’s struggle with chronic pain and Vicodin addiction. Disclaimer: Aside from the pain = opioids = addiction story line, it’s one of my all-time favorite television shows. And the emphasis extends well beyond fiction. “The Doctors” are already using “Cake” to discuss the problem of painkiller addiction in America.

Again, I don’t disagree that painkiller addiction is a sobering and serious issue. But I take issue with the conflation of chronic pain patients and drug abuse. I suppose it’s easy to assume the problem largely rests with those of us that take these drugs regularly. However, evidence doesn’t support that assumption, no matter what the media portrays. A DARE Review of 67 studies on the incidence of chronic pain patients that became addicted and/or exhibited aberrant drug-related behaviors (ADRB) concluded that the correlation is very low. Specifically, the review found:

  • In testing for abuse and addiction, the studies included 2507 chronic pain patients on opioid therapy. 3.27% developed abuse/addiction. When the group was controlled to include only those patients with no history of abuse or addiction, the percentage dropped to 0.19%.
  • In testing for aberrant drug-related behaviors (ADRBs), 2466 chronic pain patients on opioid therapy were included. 11.5% showed ADRBs. When the group was controlled as above, including only those patients with no history of these behaviors, the percentage dropped to 0.59%.

This series of studies all conclude the same thing: chronic pain patients using opioid therapy overwhelmingly do not abuse these drugs. There are exceptions, but we are not a primary source of the nation’s problem. However, when the media tackles the issue of prescription drug abuse, it tends to focus squarely on the chronic pain population. This association has real impact, on policy and perception.

For the truth, I encourage you to listen to the millions of spoonies. We use opioids as directed. They don’t get us “high”. With them, our pain is dulled, and most days, we can function. We can work. We can take care of our kids.

Listen to the spoonies, and you’ll understand the struggles we face when we attempt to obtain these medications. Consider the number of chronic pain patients that:

  • Suffer every day with unbearable pain because our doctors, fearful of DEA prosecution, won’t prescribe opioids that could help us.
  • Drive each month to the doctor’s office each month to show our license and sign for our opioid prescription.
  • Face scrutiny from doctors and pharmacists when we ask questions about our dosage.
  • Must legally document the pharmacy we’ll use to fill the prescription, limiting our options to fill the prescription.
  • Must drive to the pharmacy to learn whether they have stock. The information cannot be provided over the phone.
  • Drive to multiple pharmacies to find stock. My record is 8 CVS visits within a 40 mile radius, in one day, to fill one prescription. It took 7 hours, and I was in tears from the pain of driving.
  • Endure judgmental looks and comments from pharmacists, doctors, nurses, family, and friends.

Without opioid therapy, I would not be able to work, cook dinner for my family, or ironically, make my numerous doctor and pharmacy visits. We need understanding, genuine help, and sensible laws, not blame and judgment. Come to think of it, the same is true for those that are addicted. But that’s a post for another day.

Perception needs to change, and the media wields great power to help. Their portrayals of chronic pain patients, however, often do the opposite. This movie is just the latest example. Though I will check it out when it’s released, I have very mixed feelings on “Cake”. And that’s not something you usually hear from me.

What Am I Worth?

Recently, I had an informal dinner with a member of my new leadership team, who we’ll call Victoria*. The subject of layoffs came up. It’s no surprise that the tech company I work for is cutting back its workforce, so we were discussing it and the potential impact on our business. I immediately thought of my own experience in July 2013, when my role was eliminated as part of a broad reorganization.

Since I just started in my current role 2.5 months ago, I thought I’d share my story with her….part of the “getting to know you” process. Back in 2013, I felt fortunate to be offered two alternate positions immediately, a rare luxury among the 17 affected people on my team. I knew I’d be taking one of those two roles, versus looking for a possible better fit. You see, I had returned to work from disability in late 2012. While I was out, my role was backfilled. When I got my doctor’s approval to return, I was “on the clock”. I had only 30 days to find a new gig. Needless to say, I was not anxious to repeat the uncertainty of that experience less than a year later, even with the offered 60 days of search time. After I explained this — my story with a happy ending — she paused thoughtfully for a moment. Her response left me speechless.

“I’m surprised they would offer you a choice like that, since you were just out on disability.”

Stunned, I immediately launched into my complete company resume, ticking off each accomplishment. Presumably, Victoria knew about my career successes, and brought me onto the team because of them. Her comment made me feel that I had to defend myself. That regardless of my achievements, my disability leave downgraded my stock as an employee.

I’m proud that in that moment, I defended myself. But I reacted from my back foot, extracting every bit of evidence of my professional worth. Here’s what I wish I had said:

Victoria, I have spent most of the last decade dedicated to our company. I take great pride in the work I do, and in what I have accomplished here. For more than half of my 8.5 years, I have also battled Rheumatoid Arthritis. I have won awards, received promotions, and regularly earned the highest review marks possible, both pre and post diagnosis. I am an asset, and my work earned me the choices I was given. My disability status was not, and should not be, a factor. Your comment suggests that I should have been given fewer options simply because I took company-offered leave when I was too sick to work. That is horribly insulting, both to me and to our company.

I realize that people make mistakes, that they say things without thinking. This did not feel like that. My view of Victoria, and of my place on the team, immediately changed. I am having a hard time believing that my experience won’t be affected by her view that “disabled = less deserving”. It seems assumed that I cannot produce the same level of results as my peers, because I have physical limitations. I wrote awhile back about my typical “Brains versus Brawn” response at work. Until now, it’s been largely effective, and has allowed people to get more comfortable with my disability. But for the first time, I’m concerned that I am viewed as an anchor, not as an asset.

* Pseudonym to protect her anonymity

Happy International Day of Persons with Disabilities!

Did you know that today is the UN’s International Day of Persons with Disabilities? According to their site, this year’s theme is “Break Barriers, Open Doors: for an inclusive society and development for all”. Absolutely!  Consider these statistics from the UN website:

  • Approximately 15 percent of the world’s population, over 1 billion people, live with a disability in some form.
  • People with disabilities are disproportionately represented in the lowest socioeconomic brackets.
  • Disabled people face not only physical, but social and cultural barriers that exclude them from equally participating in society.
  • People with disabilities have a higher mortality rate than their able-bodied peers.
  • Disability often equals unequal access to education, employment, healthcare, and legal support.

I am really proud of the work that my company does around accessibility.  Technology can do so much, and we’re dedicated, as are many other corporations and organizations of all shapes and sizes.  But there is so much more to be done.

A few weeks ago, I read this article, and though I only spend small amounts of time in a wheelchair, the author’s sentiments struck a chord with me.  What’s funny is that there was a similar one just a few months earlier, and some of themes are repeated.  I am sure many of you can relate.  I know I could.

Then, there’s this.  As a frequent Disney guest, the idea that people would take advantage of the disabled policy to “get to the front of the line” outrages me.  Disney’s wonderful treatment of the disabled makes it possible for all enjoy their vast theme parks.  They think about access, and they make it comfortable whenever and however they can in the parks and their resorts.  Every park is not so thoughtful.

I attended one of their competitors in a wheelchair, when it was not possible for me to go another way.  I was almost injured trying to enter two different rides.  In both cases, my wife could barely weave my chair through the narrow lines, and when we got to the end, the workers shuffled me onto the conveyor belts with everyone else, as if I was as able-bodied as the next guest.  Some might say that I should not have been riding (see above: societal/cultural barriers), but really, the ride was perfectly safe for me.  The 90 minutes standing in line, the other 10 hours in the day, and the conveyor belt system were the problems for me. Do those things mean I should not be permitted to ride?  Not at Disney, though they are now changing their policies, reportedly at least partially because of the reports in the above story.  Sad, though I still have faith that they’ll do a good job providing access to everyone.

As even these few articles and my minor experiences show, there IS much to be done.  More than that, it’s complex.

Physical and technological modifications must be made so it’s possible for anyone to perform the same tasks as an able person; whether they’re an amputee, someone in a wheelchair or with a cane or walker, with a vision/hearing/mental disability, or anything that makes them differently abled than the majority.

However, attitudes must changes too.  If we’re not willing to start a conversation, if we don’t invest and fund improvements, if we focus too much on the “dis” and not enough on the “ability”, if we cannot look someone who looks, speaks, or acts differently in the eye and just see them as human, we’ll never get there.  Thanks to the UN, and to all who fight for our different abilities, for giving us focus today. I’m with you!