ELISA FRIEDLANDER
  • Home
  • About
  • Blog
  • Chronic Pain Support Group
  • Writing
  • Hearing Loss
  • Contact
  • Home
  • About
  • Blog
  • Chronic Pain Support Group
  • Writing
  • Hearing Loss
  • Contact
ELISA FRIEDLANDER

April 07th, 2021

4/7/2021

0 Comments

 
***Please visit my NEW WEBSITE AT www.InkToInsight.com



INTRACTABLE PAIN & INTRACTABLE LOVE: PAIN AND INTIMATE RELATIONSHIPS
Picture
0 Comments

ASKING FOR HELP: WHY DOES IT FEEL SO HARD?

12/23/2020

4 Comments

 
(This is a modified version of my piece published in the December 2020 rsds.org newsletter)

What Does Grief Have to Do with It?

 
It’s that time of year, when we tend to make more space in our lives for gratitude, giving, and even miracles. And considering the unique challenges of this particular holiday season, perhaps we’re turning toward these notions even more.
 
Yet even in non-pandemic times, the holidays can be difficult, especially for those dealing with loss of any kind. Feelings of longing or loneliness are especially highlighted in contrast to seemingly unending snapshots of togetherness on social media and television’s portrayal of the ideal. 

If you visited this page because you have a medical condition causing chronic pain, you've undoubtedly confronted inherent (and unwanted) changes in your day to day life. During that early stage after diagnosis, we see ourselves through the lens of what we did, and who we were prior to a life impacted by intractable pain. In other words, people with chronic pain often become involved in an intimate relationship with grief.

When we ask for help it can remind us (consciously or not) that we’re no longer able to do things we could do pre-diagnosis days, at least not in the same way. On a deeper level, needing help can remind us that we’ve lost a part of ourselves. No wonder the topic of asking for help is so weighted. Who wants to open up to feel that sense of loss? Who wants to be reminded about something that’s so hard to accept?
​
A Foundation of Self-Acceptance
 
A friend of mine who, gratefully, does not live with a pain condition, recently lost one of the most important people in her life, her precious aunt. Not knowing how I could possibly help (do we really ever know what to do or say when somebody dies?), I reached out to express my condolences, and asked if there was any way I could support her in this time of grief. She responded by saying she finds poetry to be of comfort and asked if we could read some poems together over the phone (if not for the pandemic, I imagine we would have met in-person, somewhere in nature).
 
As much as I love poetry (and all things related to the written word), it wouldn’t have occurred to me to offer to help her in this way, and hearing her request gave me a surprising sense of relief. I couldn’t bring back my friend’s loved one, or take away that gut-wrenching sorrow, but I could - in a clear and concrete way – give her something she needed.

​I also felt a sense of admiration. I don’t know if she would have directly asked me for these poetry sessions if I hadn’t reached out, but she responded, and did so with clarity and a quality that should always be a priority for people with high-impact pain - self-care. Ultimately, my friend’s ability to make this request came from a place of self-awareness, as if to say, “I need the comfort of poetry right now” and self-acceptance, which might sound like this: “I’m in a lot of emotional pain… I lost somebody I love dearly” or, “As hard as it is, I will feel these feelings of grief”, or “I don’t need to go through this alone”.
​
Picture
Challenges to Asking for Help

Most people have at least some skills to communicate their need for help. So, what gets in the way?
 
My friend had clarity about what she needed, but her response, and why it was so striking to me, was not the norm. Most people have difficulty identifying what they need from a loved one in the first place (which of course makes asking for help impossible).

Another barrier to asking for help has to do with feelings of vulnerability. As children, we didn’t learn how to express our vulnerabilities (much less how to grieve, or how to ask for help).  Underneath that vulnerability usually lies a sense of fear, so it’s helpful to ask ourselves, “What am I afraid of”? For some, the fear is about appearing weak; others fear rejection or even abandonment. All of these feelings are amplified by the magnitude of physical pain and other symptoms secondary to an incurable medical condition.
​
We must also acknowledge our societal value of independence (and our hard-wired propensity toward it) and look to our family upbringing and cultural beliefs to understand our feelings and behaviors about asking for – and receiving – help. From that point, we can move to a place of self-acceptance and make choices that are in our best interest. Easy-peasy? Nope, it’s a psychological process made more doable by – you guessed it, getting some help!
 
Chronic pain also tends to evoke feelings of guilt. If you feel guilty about asking for “too much” from people, consider one of the greatest antidotes to pain and suffering: being of service. Contributing to the world, even in small ways, connects us to humanity and gives us a role in repairing society. When we ask ourselves, “How can I be of service to others?” we show up more presently in all of our relationships and worry less about asking for help.
 
Like my friend did, we should allow ourselves to grieve and become open to self-acceptance. Only from that place can we become curious about what we need and ask for it, and we can best learn this through mindfulness practices (e.g., meditation, journaling, yoga). Mindfulness practices should be part of our daily lives, as they are the entrances to self-acceptance.

Asking for Help and Needing Help
​

Ask yourself if one of these statements resonates more:
“I don’t know how to ask for help” or
“Asking for help feels awful because I don’t want to accept that I need the help?
Picture

​​However related, distinguishing between these two issues is the place to start. Here are some tips for both that I hope you find helpful.
  • Clear communication (begin from a place of “I…”)
  • Specificity (ask – in simple terms – for exactly what you need)
  • Express gratitude (versus apologizing for needing help)
  • Use your resourcefulness (access various means of support so you’re not relying on only one person)
  • When it feels particularly hard, shift to asking for help from a place outside of yourself. This, of course, is different for each of us, depending on our beliefs. We might ask:
 
  • Please help me accept my pain levels today
  • Please help me find self-compassion in this moment
  • Please help me be okay with asking for help
 
Where we might seek help for deeper inner-wisdom:

  • prayer
  • poetry
  • angels
  • nature
  • journal writing
  • G-d or a higher power
  • a loved one who has passed
  • the animal world (oh, the wisdom animals have to offer!)
  • photographs
  • the Universe
  • the dream world
 
People who care about us want nothing more than to take away our pain. So, until a day comes when they can hand us the key to a cure, why not find ways to let our loved ones experience what my friend gave me – the chance to help in a concrete, doable way. These opportunities are sacred gifts, and who doesn’t want an unexpected gift – especially this time of year.
4 Comments

How one word makes life with Chronic pain joyful

11/21/2019

2 Comments

 
It was an honor and a joy to write this uplifting piece, originally published in the National Pain Report. Enjoy!

People frequently ask me how I'm able to smile so much when I have such intense pain. The answer resides on my bookshelf. 
 
She's a glittery pink ampersand, the symbol of one of my most central values. We've had an intimate relationship for decades and, without her, it's possible I might not even be here today. Amps is surrounded by books on meditation, writing, health, poetry, psychology, and religion. There's some fiction in the mix too, but Amps is in true company with the stuff of real life. She's a spiritual guide within her own right.
 
When I was a teenager going through one of those calamities of adolescence, my dad would sometimes remark on how cool it was that I could still laugh in the midst of struggle. That stuck with me; it taught me that even when things seemed unsurvivable, there was always an "and." Later in life, within the context of my work as a psychotherapist, I noticed many people didn't grow up learning (either directly or incidentally) that two seemingly divergent realities - such as pain and joy - can co-exist.
 
In the throes of intense physical pain, the ampersand can help us have a better quality of life. We can become so focused on wanting to come down a few notches on the pain scale (you all know...that obnoxious tool that boils the complicated ordeal of chronic pain down to a number) that we forget what exists outside of our bodily suffering. We yearn to move away from "9," in hopes of landing somewhere in the middle of that extreme and an unrealistic "1." In the process, we can forget there's more to our story. 
Picture
I can't go hiking anymore, and I'm mesmerized by the birds on our deck.
 
My body hurts every day, and I have hope. 
 
The pain sucks, and reading the Pain Report makes me feel less alone. 
 
My pain is getting worse, and my friend distracted me for a brief time today.
 
Mornings are getting harder, and I'll make changes in my routine.
 
I'm sick of this pain, and I passionately love my spouse.
 
I insist on giving voice to truths other than my pain, and it's not easy. My body speaks loudly, through the language of CRPS (Complex Regional Pain Syndrome) and an unruly, progressive spine disease. My central nervous system is like a journalist, reporting from the moment I awaken each morning:
 
Shards of jagged glass scrape Elisa's entire spine. Burning hot razor blades slice into most of her body. Freezing metal vices crush her bones. Parts of her swell with shades of red, blue and purple. Ah, we have a clip: Watch as she attempts to get out of bed. She's moving like a 90-year-old woman post-surgery after the lidocaine has worn off. It will take hours of self-care before she's able to function. More later - when we check in with "Afternoon Elisa." Watch this space.  
 
My body's personal journalist (yes, she has the voice of Rachel Maddow), is accurate, yet she only has access to part of the story. It is my responsibility to ensure that my spirit has it's say as well: Grief - and gratitude. Disappointment - and hope. Frustration - and love. Immobility -and imagination. Fear -and movement. There is always more than one truth. Yes, I have excruciating pain - and I have joy. When the words "Yes, and..." unite, they become the power couple of the English language.
 
When CRPS flares up (or worse, creeps into another part of my body), I feel sad and frustrated; it renews my sense of loss related to my illness. Even then, everywhere I look the leaves are transforming into vibrant fall colors. I get to go through the normal and necessary process of grief, and I get to be awed by the change of seasons en route to my doctor appointment. 
 
When we make space for experiences that don't naturally gravitate toward each other, we do more than "listen to our bodies" (good advice, but only part of the conversation). We allow our spirits (that fire-in-the belly part of us) to speak, meanwhile quieting the demanding voices of our bodies. 
 
Try this: When you're struggling to see anything outside of your physical suffering, imagine your pain as a precious and breakable object. You're naturally holding it with two hands, tending to it's vulnerability with care and protection.
 
Then, imagine moving the object - your pain - into just one hand. You're still holding it with awareness and support. Look at it and say, "I've got you." Now, take a moment to see what you freed up space for in your empty hand. If it's something essential to your spirit (creating, loving, being in nature, playing with your dog, etc.), the weight of pain on your life will feel a bit lighter.
 
So, go ahead, befriend the ampersand. I think you'll find this sexy, curvy little symbol an alluring gateway to endless possibilities that make each of life's moments better. 
 
Thanks for reading. I need to bring this piece of writing to a close because this weather is causing a flare...and...the smell of the rain is intoxicating.
 
What, besides your pain, are you holding?
2 Comments

Mind, body, spirit...and hairspray!

9/29/2019

0 Comments

 
Picture
Image by Arriva436 Courtesy of Wikimedia, Creative Commons
This piece was first published in the Mail Tribune.

Shortly after settling in to watch OSF's production of
Hairspray, I fell madly in love with teen dance sensation, Tracy Turnblad. Exuding an explosive passion for life, she's uncontainable in all the best ways. Tracy has a voice that needs to be heard, and she uses it to question the absurd notion that size, race, physical ability or gender has anything to do with how, when, where or with whom we interact. And don't you ​dare tell her she can't dance.

"My mind tells me no but my feet tell me
go!'" 

Tracy's words have been echoing in my brain since I saw the play. She speaks to a discrepancy between her mind's guidance ("I'm not supposed to do this....") and her profound need to boogie her voluptuous self right into that audition. She's frustrated and indignant; caught between the reality of what is, and what should be. 
​

I get it, Tracy Turnblad; I am you--with a little twist. Edit that quote of yours a bit to read, "My mind tells me go but my feet tell me no!" and it's my story, one I share with brothers and sisters all over the world. It's the story of disability secondary to intractable pain (a constant state of severe physical pain which has no known cure, and is not easily managed). 

Along with the hits we get from societal stigma, it's difficult when our own bodies impose limitations on our lives, and the struggle goes deeper than the mind. The real emotional impact is born from incongruence of spirit and body. Our spirits are life-sustaining; they inform us we
must create, write, connect, sing, snuggle our dogs, or dance.​

Picture
I think of my own spirit as a current of rushing stream water, mingling with fish and playing with leaves and fallen branches. It joyfully crashes upon this stone and that stone, shouting out, Lithia Park is incredible! Life... is freaking amazing! 

And then there's my body. 

My body, the physical container of my spirit, is the sludge residing at the stream's bottom. It longingly looks up at that sunshine-dappled spirit (oh-so-close but unreachable). Not a blip of light gets reflected onto my mess of a body. Sludgier and sludgier it becomes, despite the quality of treatment it gets day in, day out.  


​The emergence of spirit-body conflict is something we'll all inevitably experience at some point in our lives. Appreciating and honoring these parts of ourselves, sludge included, is critical so we can to attend to their unique needs and give them the care they deserve. Easier said than done? Absolutely...an ongoing process. 


So thanks, Trace, for your vibrancy and inspiration. I hope to see you again and vicariously express my spirit through the musical wonder that is your body. Until then, no amount of sludge can hold back my mind, body or spirit from those random moments throughout the day, when I joyfully sing out "Good Morning Baltimore!"
0 Comments

spirit-body dialogues

9/7/2019

0 Comments

 
Hey everybody! No writing here today...but I have a five minute video for you!

This video (along with thirty others from around the country) was selected by the U.S. Pain Foundation as part of a national campaign, September Pain Awareness Month.

As you know, awareness leads to better research, education and support. This positively impacts not only persons in pain, but loved ones and professionals as well.

Please click here to see me speak candidly about how chronic pain affects my life, and some of the ways I cope with it. As always, feel free to share. 

Until next time! 💜
0 Comments

INDEPENDENCE REDEFINED

3/19/2019

2 Comments

 
Picture
Recently, during a dinner outing with my wife and another couple, I mentioned my plan to try driving again (it's been several years since disabling neck pain and other medical problems made driving a thing of the past). One friend responded, "Great! You can finally be independent!" There was no ill-intention in her comment. Still, it felt like an eyelash jabbing my cornea. At the time, I just nodded. My "response" came later that evening when I was alone in my head:

So, let me get this straight: Out of the four adults sitting in this restaurant booth, only three are independent? The three who drive?

I don't think so.

"I did it myself!" It's ingrained in us. Just look at a baby waddling toward her parent on her own for the first time. She responds to excitable feedback, and the prideful scene is juicier than those yummy fat rolls on her delicious baby legs. As adults, we still feel joy from solo accomplishments (even more so when we've fallen on our tush a few times en route).

But what happens when we can no longer do things on our own and our Western value of independence is threatened? How do we contend with the psychological problems that arise from valuing ourselves (and others) based on our learned ideal of self-reliance?
Picture
In adulthood, our struggle with autonomy often begins with aging. Hearing, vision, or mobility changes can disrupt daily activities; sometimes to the extent that we question our own identity.

For me, grappling with independence began earlier, smack in the middle of my forties. Pain from failed spine surgeries and the subsequent onset of CRPS became disabling and, sadly, I needed to put my busy psychotherapy practice on hold. I spent days and nights struggling in pain, trying to figure out how to do simple tasks. Helping adults and children had been the focus of my entire career; now I couldn't even help myself. If I couldn't cut my own food at dinner; if I no longer had my work and I wasn't able to drive, what did that mean for me?

It meant I was no longer the independent person I had been all my life. At least that's what I thought in the beginning when grief adhered to me like sap on a pine tree. This grief was dripping with that pin-sharp word my friend mentioned. Independence and I have been intertwined for as long as I can remember. I dug up this poem I wrote when I was eight years old:

Once there was an elf
She climbed upon a shelf
She did it by herself!
She helped another elf!

This early exercise in self-expression communicates that Little Elf's mind wasn't really on the goods awaiting her atop that mountainous piece of furniture. No, she was all about determined self-reliance. It made her feel like she could do anything those characters in storybooks could do; even make her way up a lofty shelf full of books! This desire never changed; neither did her value of helping others. Some elves just know they're meant to become therapists and help people get perspective on their inner-s(elves).

Disability prompted my own quest to re-evaluate life, from both an internal and societal stance. I developed a closer relationship to interdependence, but also stayed true to independence. I was able to embrace both by redefining what the latter truly means--and what it doesn't. I realized independence isn't driving to an appointment. That's convenience. It's not lifting a bag or walking. That's mobility. It isn't hearing, or talking. Those are communication modalities.

​Independence is about personal agency. When we make choices and take action from a place of confidence and intention, we're in control of our lives. Independent minds assume responsibility and exercise resilience amidst difficult circumstances.
Picture
So, as it turns out, I never actually lost my independence. What I lost was a life of relative ease...something we can all relate to (or will relate to in the future, merely as a result of the aging process). Grief from this will creep up and jab us all in the eye sometimes, so we must acknowledge it and respond with self-compassion. Only then, can we befriend that elf within us who finds creative ways to keep climbing--always lending a helping hand along the way.


2 Comments

My disability is everybody's problem

12/8/2018

13 Comments

 
Picture
Photo credit: Abu_badali~ via Wikimedia Commons
Talk about the 1990 Americans with Disabilities Act (ADA) has surfaced since the recent death of President Bush who, despite opposition from his staff, signed the ADA into legislation. The civil rights law, prohibiting discrimination against persons with disabilities, moved forward because of the disability advocates who marched, sat, spoke and fought for it in the first place. Still, nearly three decades later, people living with disabilities know the struggle still exists. 

I recently caught up via email with a local friend I hadn't seen in weeks. "I assume you're doing well, since you're going to Arizona this weekend," she wrote. A reasonable assumption, but not quite on point. Things have been hard--really hard--since a recent RSD/CRPS spread which, for now, I'll sum up with own my initial response: Are you kidding me?!! Despite my body's turmoil, I wanted to attend to a part of my life separate from the pain, so I made the choice to travel. 

We find the cheapest flight available, which means changing planes in LA and no checked luggage, but it's doable. We head down south to visit family in Arizona, family that is unable to come our way due to their own medical issues. After the first of two short flights, we de-board (my wife, of course, carrying the physical load). Just outside the terminal gate we learn where to go for our transfer, down the short walkway and to the shuttle, easy peasy. Upon arrival, we breathe easy knowing our second plane gate is just ahead. 

We walk through the doorway to…what?!! A sense of confusion; imprisonment. Nothing but a huge flight of stairs leading up to our gate; no elevator or escalator in this closed-off space. Just a ridiculous amount of stairs, loads of people who seem to be skipping upward, and our own dropped jaws. Still, I keep looking ahead like it's an open fridge and I'm waiting for something other than yogurt and condiments to appear.

Read More
13 Comments

How imagination can ease pain and anxiety

12/13/2017

6 Comments

 
Picture







Whoa, I took what I thought would be a brief hiatus to focus on our move to Oregon earlier this year and—poof!—became a blogger-with-neglected-blog cliche. But, I’m here now on this crisp, clear morning and so are you, so…welcome, and thank you!

We’re here in the midst of holiday season. Gathering with loved ones, whether joyful or stressful (or a likely combination of both), can lead to an increase in pain. Inability to participate because of pain, as we all know, can be distressing and sometimes heartbreaking. So, it’s time more than ever to step up the self-care and attune to our bodies and our minds.

I’ve done an ultra-modified yoga-pilates-physical therapy fusion at home for years. My practice, born of necessity and desperation, is partly comprised of various techniques I’ve picked up over the years. The rest of it consists of a bunch of things my body just wants to do.

Lately, my body has been telling me to switch it up and—wouldn’t you know it?— I saw a flyer for an adaptive yoga class. My first class led to a flare-up, a painful “Told you so!” echoing from my limbs, reminding me to be more aware. Clearly, I would require adaptive adaptations, but with the thoughtful help of my two new teachers, I’d make it work.

When we got to a pose that was too painful to do in any form, one of the teachers suggested I imagine myself doing it. She explained to the class that we can benefit from simply preparing our bodies for the positions and visualizing them. So, I engaged my core, focused on my breath, and did the pose in mind only. In other words, I acted as if I was physically moving my body.
​
The suggested modification reminded me of the impact visualization has had in my life for so many years, especially since pain from CRPS and a complex spine condition progressed. Those of us in pain act "as if...” for the benefit of others all the time (behaving as if we’re not in pain, for example). So, think of visualizing as a way to project an “as if...” image solely for yourself. If your leg is cold and hurting, imagine it’s swaddled in a soft, warm blanket. If a venue (or a person) is overly stimulating, take slow breaths and gaze at the ocean in your mind.
Picture

Read More
6 Comments

Five Ways Community Takes the Edge Off Post-Election Blues

11/17/2016

6 Comments

 
Picture

Read More
6 Comments

A Measured Approach to Pain

9/6/2016

2 Comments

 
Picture
Oliver Hebrard via Wikimedia Commons
Picture

​There’s one question I’ve been asked more than any other in my adult life. On a recent visit to the emergency room, I heard it once again. My pain was so intense I could hardly tolerate the standard intake procedures: getting my blood pressure taken and explaining why I was there was beyond me. When I told the admitting nurse about my symptoms, she followed up with those overly familiar words.

“What’s your pain level on a scale of 1-10?”

I couldn’t do it. It might have been the feeling of scalding hot knives piercing my body that caused me to rebel against the nurse’s inquiry. Maybe it was the bored look in her eyes, which stayed fixed on the computer screen as she talked to me. Whatever it was, I wasn’t going to play the game, not this time.

“I’m in the ER,” I groaned.

That didn’t satisfy her. She repeated her question as if I didn’t understand the first time. I squirmed in my chair and told her it was off the charts, beyond a ten, and I wouldn’t be there otherwise. I suppose I should be grateful she didn’t give me the smiley/frowny-face version of the pain scale; instead she murmured “10” and continued typing as if I wasn’t there.


I'm one of the 100 million americans who suffers from chronic pain. This number exceeds those affected by diabetes, heart disease and cancer combined, according to the American Academy of Pain Medicine.  The more than 900,000 doctors in the United States and multitude of nurses need a better way of interacting with and caring for this astronomical amount of people.

Chronic pain presents a myriad of other problems as well. While knowledge has increased over the years, pain is still poorly understood, and most physicians aren’t trained in managing it clinically. Many doctors lack information about less common underlying causes and related conditions. This makes it difficult for patients to get an accurate diagnosis. Another concern is that the medical profession often fails to acknowledge the emotional aspects of pain, or even the effects pain has on daily living.

As if these barriers to patient care aren’t enough, society often disbelieves or blames people in in chronic pain. This stigmatization leads to further suffering from isolation and lack of appropriate care. Uninformed and biased response to use of opioids is one unfortunate example of this, as is the American Medical Association’s mind boggling determination that pain assessment is no longer a necessary part of patient-doctor dialogue.

One of the most significant problems is that the medical world has limited ability to measure how a person hurts. This means chronic pain sufferers aren’t getting the support or relief they need. The standard measurement of pain consists of a description by the patient (typically brief) and the doctor’s interpretation, both of which are too vague. Unlike blood pressure or temperature, clinicians can’t objectively measure pain.

The 1-10 scale can offer information to a certain point, but its usefulness is severely limited. At times it’s even more stressful than helpful; it certainly was for me that recent night in the emergency room. I knew my answers gave no particulars about how I felt, and I had to rate my pain so many times I lost count. I was asked at intake, when I got into a room, the moment I swallowed medication, after they took images, and every time another nurse came by.

Aside from the minimal information my number provided, how much difference was a few minutes going to make? Typically, not enough to move up or down on the arbitrary scale. I suppose I could have rated the pain in more detail, like I was an olympic competitor, and given digits based on execution and difficulty. The nurse fails to properly insert the IV into my vein for the fourth time? A one point gain. Slightly less hurting in one of multiple painful areas? One-tenth of a point deduction. 



​As patients with pain, we are judges determining our own scores, but, it is our role as expert commentator that needs to be honored in the doctor-patient relationship. Medical professionals need a better way to understand the many levels of a person’s suffering, and the only way to do this is to gather information directly from patients. We need to be able to share our narrative with our doctors.


Even though pain is subjective, there’s a well-regarded method which can help. In 1971 Dr. Ronald Melzack and his colleagues at McGill University developed an assessment tool called the McGill Pain Questionnaire (MPQ). A review of the MPQ resulted in the development of a short-form version, the SF-MPQ-2 (revised in 2009), which addresses both neuropathic and non-neuropathic pain. This is the first tool of its kind to measure pain on a multi-dimensional level. Although far too few doctors implement it in their practice, it’s one of the most reliable pain assessment resources available, and is used by clinical researchers around the world.

The pain questionnaire offers descriptors to measure three dimensions of a person’s pain experience: affective (emotional impact of pain such as fear, anxiety or depression), sensory (location, intensity, temperature, pressure, pattern), and evaluative (intensity of the overall experience, actions that increase or decrease pain). Patients choose from well-researched descriptors (such as throbbing, stabbing, sharp, searing, numb, dull, cold, torturing) to explain the effect of pain in each of these three areas. You can imagine how useful this could be when used over time to determine how we respond to treatments, and to see patterns of progression or remission.

Another helpful tool is the McGill Pain Index (MPI), a scientific pain scale born from the McGill questionnaire. A diagram rates the level of pain for various conditions on a scale from one to fifty; zero indicates an absence of pain, while higher numbers show increased suffering.

As an example, when you look at the index you see that a fracture rates as a 17. Complex Regional Pain Syndrome (CRPS), one of the most painful conditions that exists, has a score of 46. That means it’s more painful than those with lower numbers including unprepared childbirth, non-terminal cancer and amputation. As somebody who personally lives with this harrowing medical issue, the chart emphasizes why CRPS is nicknamed the “suicide disease.”

So, considering the value and potentially powerful impact of these assessment tools, who can they help?

Medical and mental health professionals
The questionnaire can help doctors discriminate between varying medical conditions, make diagnoses, and more effectively treat patients.  The pain index can help psychotherapists conceptualize the physical impact of a particular problem that’s unfamiliar to them. Like any other approach, this can only be effective when there is a trusting and mutually respectful relationship between patient and caring professional.

Family, friends, supports
Many people with chronic pain feel they lack adequate support. Although loved ones shouldn’t need a diagram to help them with empathy, a look at the pain index could expand their hearts (and minds). It might inspire compassionate souls to extend the simple kindness of reaching out on occasion. See Christine Miserandino’s clearly explained Spoon Theory to help those in your life understand your day to day reality and Princess in the Tower for her lovely writings on coping with chronic  pain. 

Women
With respect to men who also suffer from pain, it’s no secret that women in particular tend to get misdiagnosed or dismissed in the medical world. The overwhelming bias results in women getting less access to medications and insufficient (or an absence of) treatment. Among these and other injustices, the impact of insufficient care can lead to anything from reduced physical functioning to life-threatening circumstances. For Grace is a fantastic organization that supports women in pain.

People with chronic pain 
We can suggest that our doctors use the questionnaire and index to understand more about the source of pain, as well as it’s quality or intensity. Pain may persist despite multiple levels of treatment and self-care. Sadly, sometimes patients blame themselves, or feel frustrated about the various levels of impact pain has on their lives. The scientific picture comparing conditions can offer much needed perspective.

Patients with rare diseases or poorly understood medical conditions—and those providing treatment 
CRPS, as mentioned above, is one example of a rare disease.  Most of us who have the condition suffer alone for a long time prior to receiving any help. We see about six doctors before we even get an accurate diagnosis. This is a devastating truth considering early intervention is key to increasing the likelihood of successful treatment. Link here for information on other conditions.

Although the complexities of pain need more attention, the questionnaire and resulting pain index’s long-standing, reliable outcomes can help to demystify a person’s agony. Patient-centered assessment tools, which move beyond the simplicity of a number, have potential to positively impact the medical community and society as a whole.

​The value for people suffering from pain? Beyond measure.



​
2 Comments

rare disease: Awareness, Connection and Hope

3/21/2016

3 Comments

 
Picture
February 29th, 2016 marked a rare day. Leap year arrived and gave us the gift that comes around every four years: An extra day to check things off our "to do" lists or (gasp) relax.

The twenty-four hour bonus day set aside to make sense of the solar calendar had more meaning for those of us impacted by a rare disease. Hundreds of thousands of people around the world acknowledged Rare Disease Day, an annual event. This day is big. It's about spreading awareness for marginalized populations, connecting to others and hoping for treatments and cures.

To honor the day, I spent the morning volunteering at the Peninsula Jewish Community Center, where staff members and I had the opportunity to talk with passersby. It was clear that for many, the topic wasn't one they thought about. A couple of people asked if their disease was considered to be rare. Some grabbed a few of the "rare" snacks from the table and went on their way; after all, this issue (unlike the food) can be hard to swallow. Almost all who stopped by asked a question or two and extended support for what we were doing. That's the spreading awareness part.

Another segment of people didn't know there was a "day" set aside, but their own experiences with rare disease made it easy for them to see the need. Their faces showed frustration and desperation, and when we engaged in conversation about the impact of their condition, expressions changed to bewilderment. One woman said, "I can't believe you know what I go through...my doctors don't even understand!" That sounds about right; it speaks to the isolation of being "rare." Shared experiences? That's the connecting part.

I was surprised by many who asked the same question, "Which rare diseases are you here for?" The answer, in short, was "All of them" and that seemed hard for some to digest along with their snacks. How could all of the rare diseases, and those affected by them, need this type of acknowledgement? My longer answer spoke to issues such as engaging policy makers, addressing the need for funding and increasing support. All of this translates to medical research, development of treatments and potential cures.

Most of us with rare diseases keep current on the research that's available. We know about our conditions, and we want others to learn. We appreciate when friends and loved ones know the name of our disease and how it impacts our lives. We want a bit more from our medical professionals, but the truth is that our own knowledge usually exceeds that of our doctors. This is not a statement of pride, but one of frustration. Complexities and unknowns about our rare diseases preclude us from getting the answers we desire. Still, we take care of ourselves and find ways to move forward in our lives; that's the hope part.

We do a lot in the name of hope. We search the Internet for in-person support groups (yet often find there are none close enough). Onto our Facebook apps; thank goodness for virtual empathy and information through our online connections. We talk on the phone with strangers who have the same disease, as if we're long-lost friends. If we're lucky, we have national organizations like RSDHope and RSDSA (for those like me who are impacted by RSD/CRPS) which work hard to promote research and provide advocacy, information and support. We head to conferences, knowing for certain there will be a physical price to pay, in anticipation of meeting people who can truly relate.

Rare diseases get one official "day" each year, yet our reality extends to the remaining 364 (or 365) of them. There are so many advancements in the worlds of science and medicine, so who knows? By the time the earth rotates around the sun once more before Rare Disease Day next February, some of us may get life-changing news. At the very least I hope that all of us, including those who are not directly impacted by a rare disease, will learn something new.

For more information about Rare Disease Day or rare disease in general, you may visit: www.RareDiseaseDay.org and www.RareDiseases.org

What is something you would like people to know about living with a rare disease?
Please share in the "Comments" so that others may benefit from your contribution. Thank you!






3 Comments

Decision-Making: A Painful Opportunity

2/25/2016

7 Comments

 

Read More
7 Comments

the colorful side of pain

2/4/2016

2 Comments

 

Read More
2 Comments

things we do: Hope from the music of the 70s

1/14/2016

3 Comments

 

Read More
3 Comments

two vertebrae and a disc walk into a bar...

1/1/2016

2 Comments

 

Read More
2 Comments

A new way of looking at work

12/17/2015

5 Comments

 
This summer I had the opportunity to submit an article to a newsletter published by a highly valuable organization, RSDSA. From my perspective as a psychotherapist, I wrote about what it was like to have to leave my clients and the private practice that I loved.

My writing especially speaks to those who have experienced a temporary or permanent disruption in their work lives as a result of disability. My story and the specific outlined strategies I offer are also meant for the benefit of loved ones and professionals. 

To view my featured article, please choose this link and scroll down to page 6.

After reading, feel free to click the "Comments" link on this page to respond and/or share something about your own experience!
5 Comments

When Gratitude belies pain

12/10/2015

0 Comments

 

Read More
0 Comments

a safe choice

12/3/2015

4 Comments

 

Read More
4 Comments

I feel your pain: The power of witness in group support

11/22/2015

6 Comments

 

Read More
6 Comments

    Author

    Elisa Friedlander

    Picture

    RSS Feed

    Subscribe

    * indicates required