Spread Chronic Pain Truth on Real Life In Pain Day: September 9th

7 Feb

By Heather Grace, IPJ Staff Writer

Speak Up! Sept 9 is #RealLifeInPainDay

For far too long, those of us who live with chronic and intractable pain have spent a great deal of time hidden away, behind closed doors—especially when the pain becomes overwhelming. It’s time to change that! Please join us in sharing what it’s really like on a typical day of a life lived in pain.

Show the world what it’s really like to live with chronic pain by being a part of the 1st Annual Real Life In Pain Day! Join us via social media all day 9/9/15, using hashtag: #RealLifeInPainDay. This new social media event will take place every year on September 9th as part of Pain Awareness Month.

It’s time to tear down the walls that have separated us from the “normal” world for far too long—to finally fight the misconceptions about pain patients with a healthy dose of truth! Are you brave enough to snap a few pics or a quick video that shows the unshowered, PJ-clad reality of one of those days when you’re just too damn sick to step outside & pretend everything’s ok?

Good! The world needs to see our puffy-eyed, slightly disheveled excruitiating truth! Maybe then, people will think before they once again brazenly say: “you don’t look sick” (or whisper it, behind our backs). They need to know what it’s like to hurt so badly you can hardly breathe, much less go out into the world and brave another difficult day among the misinformed masses. They need to know how tough it is to be seriously ill yet seen as a lazy, possibly drug-addicted pill popper. They need to feel the indignity each of us has felt, as we beg doctor after doctor to respond appropriately to our cries for help. They need to understand the anguish of losing an entire support system one person at a time when you need them most—your best friend, your mother, your significant other.

Only someone like YOU, who has suffered one unthinkable chronic pain-fueled tragedy after another, can tell the world what it’s like to slowly fade into invisibility but still be fighting to be believed. So, let’s finally say the things that must be said. Let’s unite as we open the doors to the private hell of the pain patient. We need to be heard just as much as they need to listen!

You’re invited to share each and every raw, real, enlightening truth about your pain during the inaugural Real Life In Pain Day, September 9th via Twitter, Facebook, or the social media app of your choice. Don’t forget to include the hashtag: #RealLifeWithPainDay with each post!

Oh, and feel free to share this event with *everyone* you know who’s impacted by chronic pain: https://m.facebook.com/events/330332963834825.

About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.

Smile—Fake Happy Til You Make It!

4 Mar

By Heather Grace, IPJ Staff Writer

PHOTO: Heather Grace, SmilingYou’ve probably heard the saying, “Fake it til you make it.” And lots of people do, everyday. They act as if they have more know-how/money/power/status than they actually do. Sure—it’ll impress people for a time.

But… What if you don’t actually make it? Or the truth is discovered? That kind of “faking it” will likely lead to little more than a sick feeling in the pit of your stomach. It could also result in a great deal of anxiety, as you worry you’ll be found out. Or worse—knowing the real you may never live up to the fake you could cause depression.

I don’t hide behind tall tales, it’s just not who I am. Being an open book is what comes naturally to me—especially with friends & people with whom I share a bond (like the chronically ill, for instance).

I also appreciate realness in every aspect of my life. I’m not about to change my stance dramatically. However, there is a kind of “faking it” that can pay off… and in a big way!

Chronic Illness / Chronic Pain Blues

I could probably write over one hundred sad songs with all the bad days I’ve had in the past 42 years. I’ve been sick since I was a baby, with recurrent ear/nose/throat infections. By age 8ish, I was a fullblown endocrine nightmare as well. I was in/out of doctors offices & labs. My list of diagnoses seemed to grow every few years. No, it wasn’t exactly easy growing up sickly… add to that my very rocky family life (understatement of the century)—and you’d expect sorrow enough to fill a handful of blues albums, easy!

But that wasn’t me. I was like Tigger throughout my childhood & into my 20s—cheerful, looking to just be happy & experience life. I wasn’t going to let anything stop me. Hurdles, smurdles!

That was who I was up until 1999, when a work-related cervical spine injury started causing me pain as well as numbness. Working in the IT field meant long days on a computer. The pain was chronic, due to my constantly heavy workload. Thanks to the oh-so-helpful CA Workers’ Compensation System, my chronic pain became intractable pain—both constant AND severe—by 2003.

It was sheer hell and I still don’t know how I survived 2003-2006. I was seriously screwed up—but refused to believe *I* of all people was permanently disabled. But the blues began to set in, anyway.

By mid-2006, things were beyond bad. I’d hoped & prayed for years that my final surgery—microsurgery on the crushed disc in my neck—would solve everything. No one really warned me to manage expectations. No one said, “It could get better, or it could get much worse—we cannot predict which will happen.” They should have!

My spine surgery made things much, much worse. When the neck brace came off and I was set to begin rehab, I knew something was very wrong. I told the Physical Therapist that my neck didn’t feel right, like the joints was worn or had sand grinding in it. The pain and neurological sensations were strange to me—nearly indescribable—at the time. But whatever was going on, I was worried. And later, I’d learn why:

Work Comp granted this much-needed surgery too late for it to do much good. Success was not all that likely. My first MRI showing the problem was in 2001, after two years of fighting to get a more definitive test than an x-ray! But, it would take another FIVE YEARS for them to actually do the surgery?! Because my neck surgery happened much too late to prevent the nerve damage that invaded my spinal column and took over, a negative outcome should have been more easy to predict. I’d already been a serious neurological mess for at least two years. So conservatively, my chances were 50-50 that it would help, at best.

After all I’d been through with the pain, multiple nerve surgeries, epidurals & other torturous interventions that I didn’t want or need but was forced into, extreme job stress/a subsequent dubious lay-off, failed spinal surgery & worst of all—a dwindling support system, I was extremely suicidal.

Before 1999, I’d never have believed it was possible for things to go that wrong by 2006. Not for me. But the pain and numbness were so severe, they consumed my days and kept me up every night. On a good night, I got two hours sleep. I was also so alone and afraid of what my future would look like, I had no strength left in me to fight. I just wanted to die. Because I would only settle for guaranteed death, I was constantly thinking about how to do it. Finally, I decided I’d fly off the side of the freeway at a specific point I picked out, so my sporty little car would slam into the cement bridgework below.

Twice, I tried to go through with it. The only reason I didn’t actually do it was because I was waited to see if I might hit someone passing by on the rode below. After all, the end of nightmare shouldn’t be the start of someone else’s. Sitting on the side of the road, I imagined myself doing it, over & over. Everytime I pictured my car hitting the cement area I selected, I stared at the roadway below & said: Now!

Each time I did so, a car drove by. It happened over & over—both times—despite it being in an area of Orange County where very few people were on the road in the pre-dawn hours of the morning. It was infuriating!

The second time I was so crushingly disappointed and angry, I was slamming my fists into the steering wheel—hard—as I scream-cried so loudly, I worried someone would call the police. Then, the answer came to me, out of nowhere: See just one more doctor & if he can’t help, I’ll go through with my “backup plan”—cars or not.

I’ve never experienced such clarity in my life… it felt like divine intervention, even then. And now, I am certain it was!

National Suicide Hotline--Open 24/7: 800-273-TALK (8255). Thankfully, that one doctor turned out to be the one! I started 2007 anew. With his help, the intactractable pain was under control & I could smile again. I was still in pain—and I always will be—but at least it’s bearable. No chronic illness / chronic pain blues. No thoughts of suicide. In fact, I can hardly believe the person who was planning every detail of her death in 2006 was actually me. Pain management was my miracle, truly!

Even on the worst days, I am so thankful I found help and got a second chance at life. Suicide seemed like my only way out, but clearly, it wasn’t. Deep down in my soul, I know I could never let myself get to that dark place ever again. I’d reach out for help, however I had to, even if it was by calling the National Suicide Prevention Lifeline: (800) 273-8255 or going to the closest ER. I’ve learned so much by standing on that ledge, staring into the abyss. (Though I’d never recommend it!)

Unfortunately my health problems are back, with a vengeance. Things started to get worse five short years after I found my wonderful Intractable Pain doctor. I now have an autoimmune disorder that’s yet to be fully diagnosed or controlled. Autoimmune health is complex. Many of my symptoms are common to several different illnesses. In time, I’ve got to believe I’ll get the answer to a question that I believe dates back to my childhood endocrine issues. What’s certain is that my hormones are a mess. So of course, the blues are also back. I’m very thankful that I’m not suicidal, but still… Fate is a cruel mistress.

Faking A Smile—One Fake Happy Day

Instead of spending another damn day crying over anything & everything that’s wrong, an idea came to me today, based on some very applicable research I’d read a few years ago (see article below).

Research in recent years has shown that there may be a real benefit to putting on a fake smile. According to many experts, smiling isn’t just a way to express happiness… It may actually be able to cause a happy feeling. Sure, it’s counterintuitive. After all, we smile without giving it a thought when we’re truly happy. But when it comes to the smile-happiness connection, a growing body of evidence supports the theory that happiness is also possible, as an effect of smiling.

So, my mission is to try that theory out, at this very low point in my life. I have no expectations, I mean, how can I? I’m the all-real, all-the-time type. So fake isn’t exactly my style.

Still, I’m hoping there’s something to it! Even though there’s a whole lot wrong at the moment, in my entire life—from my health, to the roof over my head that’s about to be taken from me, to the hole in my pocket where money should be to pay bills—I know one thing for sure: smiling can’t hurt!

Everything’s gotten me so down, I’ve been having trouble getting back up again. So just today, I’m going to try smiling anyway.

Yes—SMILING!

It may seem silly to plaster on a fake expression, but I’ve worn the “I’m ok” mask for years, to hide how much pain I’m in. Why not take it a step further? Instead of faking just ok, I’m faking full-on zippity doo dah BLISS! I want out of this funk, darn it! Being this blue is very unlike me & it has absolutely no redeeming value. So, I’m getting out, if only for one day. (And if it works, the optimist in me says I’d be fine with faking happy it til I make it back there, for real. Somehow. Someway. Someday.)

Sure, I’m alone under a mountain of bills I can’t pay & I can’t seem to get to all the things I should have already done, no matter how hard I try… But, just for today, I’m smiling in spite of it all. Just for today—because who knows what tomorrow will bring? I’m hoping tomorrow I’ll have a reason to crack a smile, naturally… Being hopeful can’t hurt, either!

I’m trying on my 100% smile-til-it-hurts “fake happy” for 24 hours. I’ll let you know if it pays off, like the research says it should. If it turns out that it helps to grin for absolutely no good reason, I might just keep it up—who knows? Feel free to join me and take your very own fake smile for a test drive… I’m going to put the saying, “Fake it til you make it” to good use.

So if you see me, count on a smile, ear-to-ear. And if you say “good morning,” “good afternoon,” or “good night,” I have the perfect reply: It couldn’t possibly be bad!

About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org). She is also active on Twitter: @IntractablePain.

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.


Does smiling make you happy?

by Julia Layton · 03 June 2009 · ©HowStuffWorks.com · http://science.howstuffworks.com/life/smiling-happy.htm

Smiling doesn’t seem like a particularly complicated act: You feel a happy emotion, the corners of your mouth turn up, your cheeks lift and your eyes crinkle. The overall effect tells the outside world that you’re feeling happy on the inside. It’s simple and, in most cases, totally spontaneous. We typically smile without making a concerted effort to do so.

In fact, most people are turned off by the appearance of a smile that takes effort, because so often it’s obvious it’s fake. It’s not hard to detect a fake smile — it usually involves only the mouth, not the eyes.

The appearance of a genuine smile, one involving specific changes in the eyes in addition to the mouth (notably a crinkling of “crow’s feet” and a downturn of the outer points of the eyes) is called a Duchenne smile, after the neurologist Guillaume Duchenne. Back in 1862 he identified the facial muscles involved in spontaneous smiling[3].

Awkward appearance aside, research performed over the past few decades suggests there could actually be a benefit to producing a fake smile. According to many experts, smiling may not only be an outward manifestation of a happy feeling. It may actually be able to cause a happy feeling.

It’s the exact opposite of how most people see the smile-happiness connection, but with a growing body of evidence supporting the effect, it seems there may be something to it. But does that mean you can just turn off every bad feeling by faking a smile? Could you be a truly, permanently happy person if you master the look?

In this article, we’ll look at the evidence for smiles causing happiness, see how significant the effect is and find out if there are other facial expressions that can trigger the emotions they’re supposed to reflect.

In the 1970s and 1980s, quite a few psychologists got in on the smile-research action, with surprisingly consistent results.

Evidence That Smiling Causes Happiness

In 1989, a psychologist named Robert Zajonc published one of the most significant studies on the emotional effect of producing a smile.

His subjects repeated vowel sounds that forced their faces into various expressions. To mimic some of the characteristics of a smile, they made the long “e” sound, which stretches the corners of the mouth outward. Other vowel sounds were also tested, including the long “u,” which forces the mouth into a pouty expression.

Subjects reported feeling good after making the long “e” sound, and feeling bad after the long “u.”

Other studies reported similar results. One had subjects make the positive and negative expressions by holding a pen in their mouths, either protruding outward for a pout or held lengthwise in the teeth to make a smile. In another, researchers had subjects mimic each physiological trait of a smile until their faces were in a full Duchenne expression.

In yet another experiment, one group of subjects was shown pictures of various facial expressions; another group made those facial expressions and a final group made those expressions while looking in the mirror.

The evidence all points toward smiling as a cause of happy feelings. Subjects were asked questions that pinpointed their emotional state before and after smiling, and they overwhelmingly scored happier after smiling. In the study involving the mirror, subjects who watched themselves smile saw an even more pronounced change in mood than those who smiled without the mirror, and the subjects who merely looked at pictures didn’t experience that change at all.

Those researchers hypothesized that self-consciousness is a factor in the effect — that introspective people might experience a greater smile-related mood lift than those who are less aware of their feelings. Thus the mirror-related boost. But what about the difference between those who looked at pictures and those who created the expressions? Why would the people who put their faces into a smile feel happier afterward?

Most other studies on the topic note the cause-and-effect relationship without having a definitive explanation for it. The reason why Dr. Zajonc’s research is so significant in the field is because he proposes a detailed, physiology-based explanation for the cause-and-effect relationship. According to his hypothesis, the facial changes involved in smiling have direct effects on certain brain activities associated with happiness.

Why Smiling Causes Happiness

While lots of research on smiles triggering happiness was performed in the last half-century, that spurt of interest was actually a renewed interest in the topic. The theory goes back to Darwin, who proposed in the 19th century that facial expressions didn’t only reflect emotions, but also caused them.

A lack of good evidence for how that happened was put the theory on the back burner for many years. But in the 1980s, some interesting studies on the physiology of smiling brought it back into the consciousness of the psychology field. One study found that when subjects contorted their faces to indicate fear, their body temperatures increased and their pulses sped up. Dr. Zajonc’s research took this observation further, into a full-fledged proposal for why a smile might trigger happiness. It basically goes like this:

When the temperature of any body part changes, the chemical activities connected with that area also change. Therefore, when facial muscles are activated in an expression, the biochemical processes associated with those areas of the face are altered according to their temperature change. And research suggests that a cooler brain creates good emotions, while a warmer brain produces negative emotions[2].

Zajonc points to the part of the body called the internal carotid artery, which is the “pipe” that delivers the majority of blood to the brain. This artery flows through an opening called the cavernous sinus, which contains lots of facial veins. When someone smiles, causing certain facial muscles to stretch and tighten, veins are constricted. This would cut down on the blood flowing to the cavernous sinus, which in turn would reduce the amount of blood flowing through the carotid artery to the brain. Less blood volume means the temperature of that blood drops.

When that cooler blood gets to the brain, brain temperature would drop, too, triggering a happy feeling. The theory works in reverse, too: Zajonc says that when the muscles involved in a frown tighten, the result is increased blood flow to the cavernous sinus and, by extension, a warmer brain.

So, if Zajonc is right — and not everybody thinks he is, but it’s an interesting possibility — does that mean you could avoid sadness for the rest of your life by faking a smile?

Definitely not. Even proponents of the theory don’t suggest that smiling can make unhappiness go away. The theory in a nutshell is: in a state of emotional neutrality, putting a smile on your face can tip you in the direction of a positive feeling.

So don’t walk into a funeral and make everybody smile as big as they can. You’ll look insensitive, and it probably won’t make anyone feel any better. [Editor’s note: But smiling to provoke happier feelings under the right circumstances sounds like a great way to chase away the blues, doesn’t it? Especially if it works!]

For more information on smiling and emotion, visit the links below.

Sources

1. “Can Smiling Make You Happy?” Research and Teaching Showcase. Department of Psychology, University of Alberta. April 1998. http://web.psych.ualberta.ca/~varn/bc/Kleinke.htm

2. Goleman, Daniel. “A Feel-Good Theory: A Smile Affects Mood.” The New York Times. July 18, 1989. http://www.nytimes.com/1989/07/18/science/a-feel-good-theory-a-smile-affects-mood.html?sec=&spon=&pagewanted=all

3. Lienhard, John H. “No. 883: Smiles That Make You Happy.” The Engines of Our Ingenuity. University of Houston College of Engineering.http://uh.edu/engines/epi883.htm

Copyright © 1998-2015 HowStuffWorks, a division of InfoSpace LLC.

2014 INTRACTABLE HERO Award Winner Doug Cook Gives His All

11 Jul

By Heather Grace, IPJ Staff Writer

Doug and Radene Marie Cook

 met Doug Cook through his wife Radene Marie Cook, a fellow patient with severe constant pain who became my best friend. Yes, Doug is her caregiver. He has helped Radene navigate the hell that is Intractable Pain since 2000. Unlike most spouses, he stayed after her injury instead of fleeing in terror. The vows they exchanged actually meant something. Though it’s truly sad, loved ones leave when someone gets seriously ill and doesn’t get better. But not Doug. For that reason alone, he is exceptional.

That’s just where the story begins, however. Doug Cook has a quiet way about him that somehow speaks volumes, the more you get to know him. I’d know him for a while before I really saw Doug in action, at the 2010 Women In Pain Conference. Though Radene & I helped put the conference together and were also speakers, Doug Cook was the one who was a huge part of the success of the event.

He arrived hours early, bringing art and other supplies. Doug backed up his SUV, unloading and arranging everything, including beautiful art that was created for the event by For Grace’s Artist in Residence, Radene Marie Cook. Afterward, he spent at least 90 minutes aiding CEO John Garrett with conference design/setup, moving the large conference tables and nearly 200 chairs, ensuring there was plenty of room for everyone to move freely through the space. Even as the event was about to begin, Doug focused on helping people get from the parking lot to the registration area. (Myself included!)

http://www.youtube.com/watch?v=TdTBygigC34

At that point, it hit me. Doug was caring for everyone–ensuring all the people who needed help got it. He continued his efforts throughout the day, helping anyone who needed it. Holding doors for people, moving chairs so that anyone with a wheelchair did not have difficulty getting where they needed to go… doing anything people needed help with.

In his quiet way, Doug has helped make the event a seemingly-effortless success. Not because he was paid to do so–in fact he has volunteered his time. Doug Cook is one of those people with a huge heart; a natural-born caregiver. This innate quality is extraordinary in today’s world, to be sure.

And the conference is just one day among the thousands where Doug gives and gives and gives. When he isn’t assisting Radene, his parents or mother-in-law–or working a full-time job–Doug dedicates a great deal of his time to helping others. He’s been active in his community for many years, doing things like painting over graffiti and ensuring the neighborhood is safe. He spends much of his free time making the world a better place, because that’s who he is.

In 2011, Doug Cook received a Shire BRAVE Award for caregivers. The BRAVE Awards are the first and only to honor the courage and dedication of non-professional caregivers, the everyday heroes who provide regular and consistent care for other people. Out of nearly 400 nominations, Doug and 14 others were honored. Read more about the annual award at http://www.shirebraveawards.com.

In addition to being an award-winning caregiver, Doug has also become a dedicated advocate and speaker. Doug spoke about caregiving at two national conferences in 2012, including the Woman In Pain Conference.

Caregiver. Advocate. Speaker. Award-Winner. Community Leader. Doug Cook is an ‘unsung hero’ that deserves to have his praises sung today and everyday.

So Doug, thank you for all the things you’ve done and continue to do–great and small, noticed or not. Read more about Doug Cook in the caregiver story by ABC News.

About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.

Does Nature Explain Why People Leave The Chronically Ill?

15 Mar

by Heather Grace IPJ Staff Writer

A few weeks ago, some friends and I were discussing how so many people we knew had a really rough time dealing with their chronic pain. Not just because pain sucks, and takes a lot out of you, both physically and emotionally. No, sadly, that’s not the worst part. We were discussing the awful, unspoken trauma we experience when loved ones—the people that we believed would be there for us no matter what, 100%—had left when we needed their support most. If you’ve walked down the dark and uncertain path into chronic pain, you know what I am talking about… People leave.

No matter how wonderful your friends and family are, they may not be there through the worst of your pain. If it just happened to people with chronic pain that would be bad enough. But, it almost doesn’t matter what the disease is. People with serious illnesses, no matter the diagnosis, often find themselves abandoned. Critically ill people are deserted by the same loved ones who they thought would always be by their side. The question we were discussing is why?

Why Do They Leave?

One of the people involved in the discussion was the husband and caregiver of a good friend of mine, who was bedridden due to the severity of her Reflex Sympathetic Dystrophy (RSD). Though they didn’t have an easy time of it, and he admits he thought about leaving at times, he stayed by her side. She was one of the lucky ones. He marveled at how many people walk away, how they’re able to leave when someone is so sick, they might die.

“It’s as if those vows are forgotten,” I said. “I think it’s easy to say you will be there in good times and bad, in sickness and health, but do most people really mean that?”

“I don’t know. A good friend of ours dealt with cancer alone—her husband left. I’m not sure why,” John said. “Maybe it’s in our nature… you know, just like animals who carry on, leaving behind a member of the herd that is weak or sick for their own safety.”

I remembered reading about that, too. In the wild, animals instinctively desert those who are attracting predators. If one animal in the herd is dying, and the entire group was to slow down for that one animal, they’d all be in danger. So, they keep moving. Even domesticated animals have enough “wild” in them to follow their instincts about death. Cats are well-known to sneak off on their own when it’s their time, much to the dismay of their human family members.

Though it is common in the wild, not all animals turn on their kin or run off when they’re near death. Elephants have a very distinct death ritual. They remain by their ill family member’s side to the very end. Some wail sadly, running their trunks over the sick one, with tears streaming down their faces.

Could It Be Human Nature?

I had to consider whether John’s observation was, perhaps, an explanation for why this happens time and again. We weren’t wild animals obviously, but was all of this rooted in human nature? I wanted to believe we were at least as advanced as the elephants. Sure, I’d read the studies—seen how the data on attraction and how it’s wrapped up in our human evolution. I knew that what we find attractive is a complex mixture of biology, cultural norms and beliefs, our upbringing, and personal choice.

I could even buy that in some respects, we are no different than animals who unconsciously seek out a sound mate, in order to ensure the survival of the species. Let’s face it, even men that don’t wish to have children still find a woman most attractive when she is of child-bearing age and has a shapely figure, including ample breasts. Is it possible that somewhere in our nature, we are wired to leave the sick mate, and attempt to seek out a healthy one? That was where I drew the line, emotionally. I just couldn’t accept that human nature would drive anyone to leave their sick mate—to discard them in favor of a newer, less worn-out model.

My Own Experience…

Merely talking about the “why” of this phenomenon had opened a deep wound for me. I still mourn the loss of some of the people who left my side when my pain was worst, never to return. I’d lost so much then: first my job, then my house, then just about everything else. Because I’d been through the ringer as a young girl, I’d learned not to count on too many people. I was a survivor; strong enough to handle anything that came my way. I reveled in the knowledge that I worked hard enough and was resourceful enough, that I would always land on my feet. It was my unofficial motto–the thing I said to myself when times were tough and I was worried.

When it was clear I could no longer work, I crumpled in a heap of despair. The rug was pulled out from under me in a way I’d never imagined possible. If I couldn’t count on myself, what would I do? The unknown was dark and looming, growing by the minute, enveloping me a little more, each day. I tried to keep it together, but how do you do that, when you aren’t sure you will ever work again? When your support is dwindling even quicker than your money?

I’d lived with chronic pain for some time—then it became constant and severe, every minute, every day. By the time I developed intractable pain, my lack of support was excruciating. I felt like I’d happened upon a desert wasteland. There was no one left that I could truly rely on. The few friends I had left checked in on me by phone every month or so, but I became afraid to call them. Would they leave me, too?

I’m not going to pretend that being a friend to me at that time was the easiest request. I was asking the people I loved most to be there with me through a shit storm of emotions. Sad, scared, angry, anxious… running through every negative emotion you could think of, in rapid succession. Sure, it was hard. It sucked. But, dammit, I really needed a friend. There were so many times when I just wanted to be able to call someone on the phone, and know that one of them—just one—would care enough to pick up the phone and just be there for me. They didn’t need to solve anything, just listen & maybe say a kind word or two. I’d always been a good listener, was it really too much to ask someone to do that for me?

Is It “The Norm?”

I’m not sure how I found my way to a good doctor and the wonderful support I have now, but it must’ve been divine intervention. After I adjusted to life with RSD and Central Pain Syndrome, I found this whole world of people who had learned—the hard way—that people aren’t always there when the chips are down. It’s an all too common phenomenon; something nearly everyone with serious chronic pain has experienced. We almost expect it to happen to people with pain, once things get really tough.

Everyone I’d talked to about this issue had felt the same way I did; each thought they had unconditional love all around them. However, like me they had each lost several people close to them. And without fail, each of them sadly told me they had not gotten all of those loved ones back, if/when things got better. (Even when people returned, the relationship was typically forever changed. It’s not easy to mend a broken relationship when you know your loved one may once again leave if things are ever that difficult again.) Is this sort of abandonment the norm? It was tough for me to consider, probably because I’d had a rough road, personally.

Taking a step back from the worst of it, I’ve also wondered if it was somewhat of a chicken/egg problem. Did I pull away from them, or was I pushed? Was it a little of both? It’s hard to say, but having gone through so much alone, I now know: I could never do that to someone, no matter how many times they cried on my shoulder.

Chronically Ill Women Fare Worse

Looking at the loss of family due to chronic illness, the statistics are worst for women. Seattle oncologist Dr. Marc Chamberlain noticed an alarming pattern when comparing male and female patients with brain tumors. His male patients typically received the much-needed support from their wives, while a number of his female patients were going it alone, ending up separated or divorced soon after diagnosis.

He decided to do a formal study, working with four other physicians. They studied 515 patients who received diagnoses of brain tumors or Multiple Sclerosis from 2001-2006. The women were seven times as likely to become separated or divorced as the men, according to the study, published in the journal Cancer (November, 2009). Divorce was most common about six months after diagnosis, and people who were married longer seemed to fare better, overall.

While the causes of the divorces in this study are not known, Dr. Chamberlain speculated: “There clearly is an emotional attachment women have to spouse, family and home that in times of stress causes women to hunker down and deal with it, while men may want to flee,” he said.

Though chronically ill women fare worse, anyone who’s chronically ill can suffer the loss of their mate. Marriages of both men and women who are chronically ill are in jeopardy, according to a National Health Interview Survey. The divorce rate among the chronically ill is over 75%.

Why is it so hard for people to stay with someone they love in their time of need?

Yes, the marriage vows should mean something. But, we all realize that being sick is a huge loss to our partners, and that our illness changes the dynamics of the relationship. Being seriously ill impairs our ability to do the things we used to do as a couple. Feelings like guilt, anger and the accompanying miscommunication can further impact a relationship, making it rocky.

“When you lose your social and sexual partner as a result of a disability, it has a huge impact.” Dr. Sandra Weintraub, Director of an Alzheimer’s clinic at Northwestern University, said: “There’s a whole psychological layer. When you get married, it’s not to be somebody’s nurse, and suddenly you are somebody’s nurse.”

Financial problems only make the situation more difficult. When one of the household’s incomes is lost, the cost of healthcare rises, further increasing the tension at home.

Support Systems

The deck is stacked against us, but couples can and do survive chronic illness. What can you do to prevent the breakdown of your marriage or family? What sets couples who stay together apart from those who don’t? The key appears to be ongoing support for all involved.

In the book Families, Illness & Disability: An Integrative Treatment Model by John S. Rolland, M.D., the author, a psychiatrist, admits it was difficult to cope with his wife’s illness while simultaneously caring for his aging mother. “I became aware of how little my own professional discipline seemed to have to offer people in my family’s predicament.” He says, “Any family facing illness and disability should routinely be provided the opportunity for a family consultation around the time of the onset of the condition, as well as continued access to such services over the course of the disorder.

The research of Dr. Chamberlain and his associates can also shed some light on key areas of focus. His team feels that medical professionals who treat the chronically ill should consider including social workers and family therapists as part of a patient’s healthcare team, particularly for younger couples. They found that patients who lose spousal support after a cancer diagnosis are less likely to complete therapy or try new treatments. They also have higher rates of hospitalization and lower rates of hospice care, despite the fact that most people who are terminally ill prefer hospice care to hospitalization.

“It has an enormous impact,” Dr. Chamberlain said. “We know from other studies of patients with cancer that social support is so extremely important.”

Support is important for us all, no matter the diagnosis. If you don’t have the support you need from friends and family, please reach out to the diverse online community.

Sites To Increase Support/Coping:

  1. Chronic Babe’s Coping Tools: http://www.chronicbabe.com/help-desk/cat/71/
  2. Heroes of Healing: http://heroesofhealing.com.

Got suggestions for other great support sites? Tell us in the COMMENTS section, below!

*NOTE: This article first appeared at ChronicBabe.com in 11/2011, thanks to Editrix Jenni Prokopy. Check out ChronicBabe.com… You’ll love it, just like I do!

     

About The Author
Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

     

Sources:

  1. Beuermann-King, Beverly. National Invisible Chronic Illness Awareness Week. Work Smart, Live Smart: Stress and Wellness Tips Blog. September 12, 2011. Retrieved from: http://stressandwellnesstips.blogspot.com/2011/09/national-invisible-chronic-illness.html
  2. Glantz & Chamberlain, et al. Gender Disparity in the Rate of Partner Abandonment in Patients With Serious Medical Illness. Cancer, Volume 115, Issue 22. Published online: July 30,2009. Retrieved from: http://onlinelibrary.wiley.com/doi/10.1002/cncr.24577/pdf.
  3. Holding, Cathy. The Science of Magnetism. The Independent. September 12, 2008. Retrieved from http://www.independent.co.uk/life-style/love-sex/attraction/the-science-of-magnetism-926693.html.
  4. Kilborn, Peter T. Disabled Spouses Are Increasingly Forced to Go It Alone. New York Times Health. May 31, 1999. Retrieved from http://www.nytimes.com/1999/05/31/us/disabled-spouses-are-increasingly-forced-to-go-it-alone.html?pagewanted=all&src=pm.
  5. Parker-Pope, Tara. Divorce Risk Higher When Wife Gets Sick. New York Times Blog. November 12, 2009. Retrieved from http://well.blogs.nytimes.com/2009/11/12/men-more-likely-to-leave-spouse-with-cancer.
  6. Rolland, John S. Families, Illness & Disability: An Integrative Treatment Model. Basic Books: New York, 1994. Retrieved from http://books.google.com/books?id=i2qwRDemnwcC&printsec=frontcover&source=gbs_atb#v=onepage&q&f=false.
  7. YourDictionary. Why Do Animals Hide When They Are Dying? (n.d.). Retrieved October 7th, 2011 from http://answers.yourdictionary.com/answers/animal-life/animals-hide-when-dying.html.

     

© 2011-2014 Intractable Pain Journal & Heather Grace. All rights reserved.

The Affordable Care Act — Is Our Future At Stake?

30 Jan

by Heather Grace IPJ Staff Writer

After reading information on the Affordable Care Act from (what I believe is) an unbiased source: http://www.businessinsider.com/what-will-change-with-obamacare-2013-10, I wasn’t put at ease. The article confirms what I’ve been hearing from patients and doctors alike. I fear for our future–I really do.

BIG ISSUES WITH THE AFFORDABLE CARE ACT:

  1. Already in 2014, many low income/poor people who want insurance cannot get it. In truth, the ACA WILL NOT HELP UP TO 2/3 OF THE 8M POOR IT WAS INTENDED TO HELP! Though people thought the poor would get free coverage under ACA, most won’t. Of the 50 states, 26 did not expand Medicaid coverage through ACA. (Families without dependent children don’t qualify in these states, for example.)
  2. People who want to keep their “good” PPO insurance plans are already paying a huge price… they all got notices of increased taxes & have been paying them since January (if they could afford to). IN A FEW YEARS, TAXES WILL GO UP EVEN MORE FOR PEOPLE WHO CONTINUE TO KEEP THEIR CURRENT PLANS INSTEAD OF CHOOSING A PLAN ON THE WWW.HEALTHCARE.GOV SITE!
  3. Our overburdened system is already getting worse as a result of the ACA. Docs that either help people at low cost -or- are good pain care providers are seeing record #s of new patients & it’s getting hard to help them all. Because of the government’s “take it or leave it” pricing, staff cuts &/or lower cost (often less skilled) staff will be necessary for all providers that will ultimately survive the next 4yrs & beyond. So will across-the-board budget cuts. Preparations for these inevitable changes are underway. Why? PROVIDERS MUST REDUCE COSTS BY $1.6B WHILE ADDING UP TO 40M PATIENTS TO THE SYSTEM! With a system that’s poised to pay less but ask more of everyone, what’s the incentive to go to medical school? Why be an RN when you can become a CNA or LVN? The possibility that brilliant healthcare practitioners will be paid what they deserve in the future is bleak. Staffing shortages are sure to follow.
  4. ALL THESE ISSUES MAY LEAD TO A SERIOUS HEALTHCARE CRISIS if pie-in-the-sky ideas like “encouraging patients to lose weight/make healthy choices” don’t dramatically reduce the burden on the system, along w/ongoing cuts. If we can’t serve up to 40M more people with $1.5B less money, OUR HEALTHCARE SYSTEM MAY END UP BECOMING A LOT LIKE WORKERS COMP IN THE NEAR FUTURE. WC caused my permanent disability due when my spinal cord injury that wasn’t cared for appropriately. No one should wait 2yrs+ for a desperately needed MRI & then another 5yrs+ for much-needed surgery to fix a disc that’s severely pressing on the spinal cord! Yet, I did. By the time I got my surgery, it was too late. My career, my home, any chance of getting back to “normal” — everything was gone! Think I’m a rarity? Think again! I’ve met far too many people just like me, who were seriously injured &/or permanently disabled by WC’s medical neglect.

DO YOU WANT YOUR FUTURE TO LOOK LIKE MY WORKERS COMP EXPERIENCE? I lived this misery & I don’t want this sort of ‘healthcare’ for anyone! Short of expecting *everyone* to pay cash for procedures instead of waiting (assuming they can afford to), what can we do to ensure a better future for U.S. healthcare? Any ideas on how to prevent catastrophe?! Let us know in the Comments section, below. Good luck to us all…

About The Author
Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2014 Intractable Pain Journal & Heather Grace. All rights reserved.

Being Sick

12 Dec

So I’m sitting here trying to remember myself
And the details get fuzzier each day
But the truth is, that’s just how it is
How it is to be me… to be me, sick

U.N. Convention for Rights of Persons w/ Disabilities? CRPD is Against the Disabled!

3 Dec

by Heather Grace, IPJ Staff Writer

I am appalled at the tactics being taken under the guise of “equality” by the U.N. And presumably, the U.S. Senate if this vote goes through on Tuesday. The U.N. Convention for the Rights of Persons with Disabilities, or CRPD, is flat out *wrong.*

To require disabled infants to register immediately after birth (Article 18) and forcing disabled people to comply w/ mandatory monitoring (Article 33) is disgusting. Where in those requirements is there individuality *or* equal rights?! Last time I checked, this wasn’t Nazi Germany! What exactly is the U.N. attempting here?

As a disabled American, I am extremely offended–NO, OUTRAGED! Rounding people up to “protect” them will be next, right? Thanks but NO THANKS! I have done just fine without being labeled & monitored like a lab rat. The rights of disabled people have already been well established without branding us all with a scarlet “D.”

So I urge you, my Senator, to *PLEASE* VOTE NO! And, please also urge the entire Senate & U.N. to reconsider this dangerous ideology. CRPD is not about giving anyone equal footing, it’s about STEPPING ON THE LESS ABLE.

I say it again: *PLEASE* VOTE NO!

Thank you for your time & attention,
Heather Grace
Californian since birth
Disabled since 1999

NOTE: The above letter was sent to senators as well as posted to my web site and on social media. I’m speaking up for all people with disabilities, without requiring any strange & underhanded things on the part of my fellow man. Imagine that! I hope the U.N. & our U.S. government will do the same. Rethink your actions and stop playing games with people’s lives! Neither the U.S.–or any country–need your hand in the lives of our disabled citizenry!

To my readers: The full text of the CRPD is online at http://www.un.org/disabilities/convention/conventionfull.shtml. Please read it for yourself. YOU MAY ALSO BORROW MY ENTIRE LETTER (OR EDIT/SEND PART OF IT) TO SEND TO YOUR SENATOR. Contact them online at http://www.senate.gov/general/contact_information/senators_cfm.cfm. Or, call them via 202.224.3121. If you plan to do so, do it asap! The vote is tomorrow, December 4.

* Follow me on Twitter @IntractablePain
* See more articles at http://thepainstore.blogspot.com.

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