So, if you ever feel like giving up…

I wrote this post in response to a discussion that was going on in the Undiagnosed Warriors Support Group last night. I wanted to share it here because I thought that maybe it could help some of you. I know I haven’t posted all the findings/diagnoses like I’ve been promising,  but I really am working on it. I’m still struggling to put it all into the right words at the moment, even after all these months. As most people who have messaged me can attest to, I’ve had a lot going on lately. Nevertheless, I do hope that the following can at least give you a sense of where I’m coming from following my diagnosis:

“It’s so easy to fall back on those [negative] feelings because doctors and everyone else question our experiences. I can’t say what it’s like to be on the other side but, for a long time, I accepted an inaccurate psychological diagnosis, even though it never felt right to me. I even went to years and years of psychological counseling and therapy (including CBT, Biofeedback, Exposure Therapy, etc.), in addition to trying out different anti-depressant and anti-anxiety medications, but the meds only made me feel worse.

As I got sicker and sicker, the more the people in my life started to doubt both me and my illness. I honestly thought that I was going crazy; that perhaps I was actually ‘hallucinating’ my symptoms; or maybe making myself sick. After so many years of telling myself that what I was feeling was purely anxiety or some kind of subconscious eating disorder that I was possibly unaware of, I started to believe that the doctors probably got the diagnosis wrong. My psychologists at the time agreed that there was no way that a psychiatric diagnosis could explain all of the physical symptoms I was experiencing, especially now that my symptoms were clearly becoming more and more visible to everyone around me.

Even though I have a diagnosis now, I still find myself questioning myself – if that makes sense. Like, does it REALLY hurt as bad as I think it does? Or am I overreacting like the doctors said?

“It’s not in my head” – This is actually my own CT scan of the head/brain (Photo credit: Undiagnosed Warrior, 2016).

At the same time, I have also lived with approximately 20 different conditions (many of which are known to cause debilitating pain) for more than 25 years and yet, somehow, I managed to work a full-time job up until two years ago – all while going to school and staying active in sports and other clubs/activities/volunteer-work until I just couldn’t do it any longer. For most of my life, I had been taught to push through the pain; that pain was simply weakness leaving the body, and I had to keep fighting until every last ounce of the pain was gone.

Even now, I still push myself too hard sometimes because so many people have either called me lazy or crazy. It made me want to work that much harder just to prove them wrong.

Often, I find myself struggling with knowing when I need help. For instance, I never know when I should seek immediate medical attention because I’m so afraid that I’ll go to the hospital or something and be told that there’s nothing wrong with me or that my symptoms are not serious enough to justify an urgent appointment. Alternatively, I’ve also had multiple doctors tell me that I have the highest pain tolerance out of any of their patients. At least there’s that. If that’s true, though, then why do I feel so very weak and overdramatic when I tell people the truth about how in really feeling? Why am I in so much pain all of the time?

The worst of it happened just last week, when I had to prepare hundreds of pages of medal tests, lab reports, and clinical notes, along with an 11-page letter written letter, just so that I’d have enough “proof” to confirm that I was, in fact, physically stuck – and not with the kind of symptoms that are caused by a psychiatric illness either. Why did I do this, you ask? It was because one of my doctors accidentally wrote the following in my medical chart:

No joke. I was told that the only way I could have this changed or removed from my medical record was if I met the doctor face-to-face to discuss it further. It didn’t matter at all that the other specialists I’ve been seeing a lot longer all agreed that I had true “autonomic dysfunction” (or dysautonomia) based on objective autonomic testing, but they seriously wanted me to come into the office to confront the doctor in person. Ironically, my appointment was scheduled for the second last day of Dysautonomia Awareness Month – how perfect.

Although the somatoform diagnoses ended up being the result of a clerical error, I still felt pretty defensive and broken over the whole ordeal. I thought to myself, after all this – after all that I’ve been through and how hard I had to fight for a diagnosis; all the tests, all the doctors, and all the failed treatment and medications that have literally made me sick or have taken away years from my life – how dare anybody  [anybody meaning the doctor in this case] question my authenticity or call me a liar – how dare he do that to me! Obviously, this hurts me far more than I can express, I also knew I shouldn’t have been that angry over it either. I knew (and my other doctors knew) that this diagnosis wasn’t correct but I was angry nonetheless. I mean, I was really, really angry and spiteful about it. More importantly, I was hurt by the idea that I needed to “prove myself” once again. It’s so exhausting having to explain yourself over and over, while also feeling ignored at the same time.

I wish that I could say that this all gets better with time but I honestly don’t think that I’m in a “good enough” place to really make a fair judgment on this as of yet. All I can say to anyone reading this – or anyone still awaiting a diagnosis – is to learn how to trust your instincts and then follow it with your whole heart, particularly when it comes to your own health and the presentation of symptoms. Whether you’re dealing with physiological symptoms or psychological symptoms (or perhaps even both), please do yourself a favor and trust yourself because it’s these instincts that will ultimately guide you to where you need to go and how you need to get there. You can (and will) make it through this mess – that I can promise. It’ll just take everything you’ve got and you’ll have to fight twice as hard to simply get your doctors to listen.”

Gut instinct is really the key here because it is an adaptive, biological response in the body whose sole purpose is to keep us alive. It goes back to that whole automatic-autonomic response thing that we all have hidden deep inside us somewhere that ultimately drives a person’s will to survive. And, at the end of the day, isn’t that what life is all about? Learning how to survive, despite the danger?

Living Well With Chronic Illness: A Book Review 

I thought I would share my thoughts on an amazingly good book I read recently called Living Well with Chronic Illness because it has a lot of really helpful information that I think anyone managing an undiagnosed or chronic condition can appreciate.

"Living Well With Chronic Illness" Front Cover

Living Well with Chronic Illness, Joanna J. Charnas, LCSW, LICSW, (MSI Press, 2015.)

From the first page of the introduction throughout the rest of the book, author and chronic illness patient Joanna Charnas present an accurate portrayal of what it’s like to live with an undiagnosed or chronic condition in such a way that you feel hopeful for the future. I am a young woman who has spent more than 20 years feeling lost within the maze of the American healthcare system in an attempt to obtain a clinical diagnosis that could somehow explain the unrelenting and progressive constellation of symptoms I experienced since early childhood. So, I know all too well what it’s like to feel as though the only option left is to give up when doctors cannot give you the answer you are looking for. Although it’s a daunting task to find a balance between managing symptoms and having some semblance of a normal life, the book Living Well with Chronic Illness attempts to minimize the impact that chronic illness has on quality of life by refocusing efforts towards the elimination of biological, psychological, and social fatigue – all of which serve as poignant reminders of disability or infirmity. Through the use of both personal and professional examples that are drawn directly from Charnas’ own experiences, Living Well with Chronic Illness reads as though the author is sitting down right in front of you as she recounts her personal story of where she began and where she is today, along with all the lessons she had to learn along the way. So, grab a cup of coffee (or whatever beverage you enjoy) and prepare to be enlightened.

Each chapter represents a unique challenge of being sick and then advises the reader as to how to effectively cope with such adversities in order to regain control of their health and go on to live a much happier and more fulfilling existence in spite of declining vitality. Part I tackles the more emotional aspects of chronic illness by first acknowledging individual feelings (e.g., anxiety, fear, anger, hope) and then suggesting a variety of therapies that can help change negative attitudes into positive ones through humorous expression and general acceptance. Part II focuses on the special issues of undiagnosed or chronic illness while guiding readers through strategies for practical management. In fact, Part II also contains my absolute favorite chapter of the entire book entitled “Your Body Knows Best: Listen to It!” Part III concentrates on the more serious topics that unfortunately pop up in illness or disability, including the various laws governing the practice of medicine, patient rights or responsibilities, and the financial concerns of illness or disability. Finally, Part IV opens up about the spiritual considerations of those who are sick, such as the maintenance of faith and hope, while equivocally accommodating the personal or religious beliefs and values of readers, before closing with an important reminder of all the good things that come out of doing the harder things in life. In chronic illness, these are the gifts of empathy, strength, self-confidence, a sense of community, and the ability to grow or develop into a better, stronger version of our true self. Whether you are a newcomer, a veteran, a practitioner, or just somebody who wants to learn more about the realities of living with an invisible or chronic disease, I promise you will find some value within the pages of this book.


Joanna Charnas has been a social worker for almost thirty years.  She is a licensed psychotherapist in two states with a specialty in group therapy, and has spent the last 20 years working with people with physical and mental illness.  She’s a blogger on the Huffington Post and writes articles for an international health website. Living Well With Chronic Illness is Joanna’s first book.

To learn more about the author, please visit her website at https://joannacharnas.wordpress.com/about/

You can also order a copy of Living Well with Chronic Illness from Amazon.com.

Really Exciting Announcement

October is Dysautonomia Awareness Month…

and I have some really, really  exciting new to share with all of you.

Back in August, I was selected as a volunteer patient advocate for Dysautonomia International for my area and I submitted a request to city council asking for a proclamation on behalf of the City of Colorado Springs formally recognizing the month of October as Dysautonomia Awareness Month. So after following up on the request for weeks and keeping in touch with other volunteers from the organization, the city signed my request this week. It was formally announced today on the Dysautonomia International website and has been sent out to all the local newspapers and news stations in the area. I’m not sure if the story will be picked up but I’m so proud and honored to be given this opportunity.

Copy of the Proclamation

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City of Colorado Springs Proclamation for Dysautonomia Awareness Month

The Official Press Release

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Posted on the Dysautonomia International Facebook Page

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 Other Pictures

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Can you tell that I was excited?

I’ll be posting a ton of awareness stuff throughout the entire month of October, although most of it will likely be on the Undiagnosed Warrior Facebook Page. You can visit the page here  if you’re interested in learning more about Dysautonomia.

I will also have some really important medical updates to post as well. I’ll try to get those updates posted as soon as I can. Hope all my fellow warriors are managing okay.

I swear I knew it all along…

After my venogram in December and the fiasco at my follow-up appointment to discuss surgery, I had pretty much given up hope that A) we had finalized a diagnosis and B) that I would ever get better. Unfortunately, my next round of follow-ups with the specialists weren’t much better.

By the time my follow-up with gastroenterology had rolled around at the end of January, I knew there really wasn’t much left to do as every GI test had been run up to this point and I was expecting to be let go after a full year of testing with really no results. As I’m sitting there in her office, explaining how once again I won’t be having surgery as expected, she asks me why they offered me the one surgery in the first place if they knew it wouldn’t help. I honestly have no idea what to tell her – Why don’t you ask them?  – I don’t dare say that out loud, though.I look over to see my husband is once again fidgeting in his chair, I can tell he’s getting angsty. However, I wasn’t anticipating what happened next.

In almost slow motion, I watched him mouth the words …because nobody takes her pain f***ing seriously….one syllable at a time. He didn’t just say that out loud, did he? The doctor immediately asks him to leave. Okay, so I guess he really did say that out loud after all. I can tell my doctor was not amused as my husband  gets up from his chair and storms out, and I just sit there, on the exam table, in shock. Now, what? I wait for her to say something but I’m having a hard time holding back the tears in embarrassment and frustration. Really, though, my husband was right – no one does take my pain seriously and I’m becoming more and more tired each day. I really just want to go home at this point.

But somehow, the torture isn’t over for today. She says she wants me to have an anorectal manometry done to rule out pelvic floor dyssynergia for constipation that I have on and off. This is a joke, right? Nope, guess not. She thinks it’s in my head…. that maybe somehow I forgot how to have a bowel movement… I think she is far off with diagnosis. She thinks I should do it anyway. I agree… knowing I”ll prove her wrong… but finally able to leave. I’m not sure how this could get any worse, really… but somehow it always does.


WHAT IS ANORECTAL MANOMETRY?

(Retrieved from the Motility Society Website)

Anorectal manometry is a test performed to evaluate patients with constipation or fecal incontinence. This test measures the pressures of the anal sphincter muscles, the sensation in the rectum, and the neural reflexes that are needed for normal bowel movements.

PREPARATION

Give yourself one or two Fleet® enemas 2 hours prior to your study. You can purchase the Fleet enema from a pharmacy or supermarket. You should not eat anything during the two hours prior to the procedure. If you are diabetic, this may involve adjusting your diabetic medications. You may take regular medications with small sips of water at least 2 hours prior to the study.

THE PROCEDURE

The test takes approximately 30 minutes. You will be asked to change into a hospital gown. A technician or nurse will explain the procedure to you, take a brief health history, and answer any questions you may have. The patient then lies on his or her left side. A small, flexible tube, about the size of a thermometer, with a balloon at the end is inserted into the rectum. The catheter is connected to a machine that measures the pressure. During the test, the small balloon attached to the catheter may be inflated in the rectum to assess the normal reflex pathways. The nurse or technician may also ask the person to squeeze, relax, and push at various times. The anal sphincter muscle pressures are measured during each of these maneuvers. To squeeze, the patient tightens the sphincter muscles as if trying to prevent anything from coming out. To push or bear down, the patient strains down as if trying to have a bowel movement. Two other tests may be done: first, an anal sphincter electromyography (EMG), a test to evaluate the nerve supply to the anal muscle; second, measurement of the time it takes to expel a balloon from the rectum. After the examination, you may drive yourself home and go about your normal activities.

Anal Sphincter EMG

Anal sphincter electromyography (EMG) is recorded with a small plug electrode placed in the anal canal. The patient then is asked to relax, squeeze and push at different times. The anal sphincter muscle electrical activity is recorded and displayed on a computer screen. Anal sphincter EMG confirms the proper muscle contractions during squeezing and muscle relaxation during pushing. In people who paradoxically contract the sphincter and pelvic floor muscles, the tracing of electrical activity increases, instead of decreasing, during bearing down to simulate a bowel movement (defecation). Normal anal EMG activity with low anal squeeze pressures on manometry may indicate a torn sphincter muscle that could be repaired.

Balloon Expulsion Test

For this procedure, a small balloon is inserted into the rectum and then inflated with water. The patient goes to the bathroom and tries to defecate (expel) the small balloon from the rectum. The amount of time it takes to expel the balloon is recorded. Prolonged balloon expulsion suggests a dysfunction in the anorectum area. What can be learned from anorectal manometry? The anal and

WHAT CAN BE LEARNED FROM ANORECTAL MONOMETRY?

The anal and rectal area contains specialized muscles that are helpful to regulate proper passage of bowel movements. Normally, when stool enters the rectum, the anal sphincter muscle tightens to prevent passage of stool at an inconvenient time. If this muscle is weak or does not contract in a timely way, incontinence (leakage of stool) may occur. Normally, when a person pushes or bears down to have a bowel movement, the anal sphincter muscles relax. This will cause the pressures to decrease allowing evacuation of stool. If the sphincter muscles tighten when pushing, this could contribute to constipation. Anal manometry measures how strong the sphincter muscles are and whether they relax as they should during passing a stool. It provides helpful information to the doctor in treating patients with fecal incontinence or severe constipation. There are many causes of fecal incontinence. Weak anal sphincter muscles or poor sensation in the rectum can contribute to fecal incontinence. If these abnormalities are present, they can be treated. Biofeedback techniques using anal manometry and special exercises of the pelvic floor muscles can strengthen the muscles and improve sensation. This can help treat fecal incontinence. There are many causes of constipation. Some involve sluggish movement through the whole colon, whereas others involve the anal sphincter muscles. In some patients with constipation, the anal sphincter muscles do not relax appropriately when bearing down or pushing to have a bowel movement. This abnormal muscle function may cause a functional type of obstruction. Muscles that do not relax with bearing down can be retrained with biofeedback techniques using anal manometry.

Risks of Anorectal Manometry

Anorectal manometry is a safe, low risk procedure and is unlikely to cause any pain. Complications are rare: it is possible that a perforation (tearing) or bleeding of the rectum could occur. Equipment failure is a remote possibility. If you are allergic to latex, you should inform the nurse/technician before the test so that a latex free balloon can be used.


Let’s just say I was less than thrilled to have to do this test. Just the idea of having to take two fleet enemas and administer them on my own was enough to get me to freak out. Not to mention, since the test was over an hour and a half drives away, they told me to do it the night before. I was still petrified that I would have some embarrassing accident for sure. Not only did the cleansing make me super sick and dizzy, passing out every few minutes, but also had a lot of pain and bleeding afterward as well. It was almost as bad as the colonoscopy prep, only luckily I didn’t have to drink anything. Up until five minutes before leaving, I was still passing a good amount of blood. Nevertheless, I went to my scheduled appointment anyway.

Luckily, my nurse was very nice and calmed me down as I was very tense going into this test. Still, I was in a lot of pain and worried I’d embarrass myself so I was quite reserved. Along with using a balloon they also did the sponge test to see if I could “pass it”. Let me tell you, it felt like I was trying to pass sandpaper. It was horrible and I was in tears. The nurse tells me everything was within normal limits but a doctor would double-check my results to be sure. I figured my test would be normal anyways and I was just happy I was able to go home to recover.

When my follow-up with GI came around in March, I was far from prepared when the doctor told me that my manometry was positive and that I did, in fact, have pelvic floor dyssynergia. Excuse me, what? She’s sending me biofeedback therapy twice a week. Great, I think, just what I have time for. I honestly don’t know how this is possible based on my symptoms, but I schedule therapy anyway.

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After weeks of going to biofeedback therapy twice a week, my symptoms were anything but better. In fact, the extra added stress of trying to make it to therapy twice a week, on top of everything else, likely made everything worse. It was actual torture and I was starting to feel like this was punishment for my husband disrupting the appointment. The therapist also focused more on relaxing my vaginal muscles more than relaxing anything else, which I found to be useless in all honesty. How was this teaching me how not to be constipated, again? They kept asking me if I was eating – of course I’m not eating, that’s what causes the pain, but nobody listens to me. The honest truth, each and everyone one of my muscle in every area of my body  hurts. They are tense because I am always in intense pain every single day. I’m getting angry. I ask for a copy of my test results because I honestly don’t understand how I have this condition in the first place and all the results in biofeedback therapy are coming back as normal.

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When the report finally comes in, my test was borderline at very best. I knew it! I likely didn’t have completely “normal” results because I was in pain while “pushing” and now I’m really angry that I have wasted my time.

Within a few hours of reading the test results, I get a message from the radiologist that I had sent my GI scans to a few weeks back to review for me. I  had asked him to look at them for me since every doctor kept denying that I had superior mesenteric artery syndrome when the reports kept saying I had it, or the doctor would say I have the right angle for the condition but because I didn’t have dilation in my other GI scans, I couldn’t have it. Sure enough, the radiologist had confirmed not only the angle and the aortomesenteric distance, but the dilation of my duodenum was missed in three separate scans.

According to Karrer et al. (2015), the “CT criteria for the diagnosis of superior mesenteric artery syndrome include an aortomesenteric angle of less than 22 degrees and an aortomesenteric distance of less than 8-10 mm” (para. 1). My aortomesenteric angle was 17 degrees and my aortomesenteric angle was 4mm.

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When I went to my next biofeedback appointment, I share the diagnostic news with my therapist. She asks me if biofeedback has helped at all, which I of course reply that it hasn’t. She feels like the diagnosis is incorrect as well and decides to dismiss me from therapy. I have yet to follow-up with GI doctor but I have an appointment scheduled with her in a couple of weeks. Not sure how this is going to go, but I think this will be the last time that I see her – officially. Things were missed in my testing that was super important and  I could have been treated over a year ago when the testing first mentioned the findings of all these conditions. Again, if only these doctors would have listened to me or checked the scans themselves. My husband was right, despite his behavior that day. On top of it all, I was diagnosed with a condition that I feel was more of a punishment than something I believe the doctor would honestly never think that I have since I do not have 99% of the symptoms of pelvic floor dyssynergia.Needless to say, it’s going to be interesting to an interesting follow-up. Maybe I’ll bring my husband with me one more time…

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References:

Karrer et al. (2015). Superior Mesenteric Artery Syndrome Workup. Retrieved from http://emedicine.medscape.com/article/932220-workup

Motility Society (2005). Patient Information on Anorectal Monometry. Retrieved from http://www.motilitysociety.org/patient/pdf/Anorectal%20Manometry%20Patient%20Information%208%205%202005.pdf

 

What Is The Best Way To Cope With Pain?

Pain is defined as being an experience of both physiological and psychological discomforts marked by unpleasant or uncomfortable sensory symptoms resulting from some sort of damage or injury (Gurung, 2014). The origin of pain can come from a variety of sources and there are numerous ways that individuals can cope with pain, consisting of either psychological or biological interventions. Certain pain management therapies may work better than others depending on the source and duration of pain, as well as an individual’s tolerance or threshold for the pain. According to Gurung (2014), there are three primary classifications of effectively managing pain: physiological treatment, psychological treatment, and self-management techniques.

Physiological techniques for managing pain, for instance, often involve the use of pharmacological or chemical management methods, traditional or holistic treatments (e.g. acupuncture), and surgical interventions. Medicinal therapies are generally one of the first approaches used for pain management, particularly if the ailment is caused by acute pain triggers (e.g. broken bones, sprains, illnesses, etc.), and generally comprise of pharmaceuticals called nonopioid, opioids, and adjuvants. Adjuvants are medications that are prescribed to manage pain but are not solely listed for that purpose. These medications are used primarily because they have shown some effect in helping to manage pain, although they may elicit different physiological responses. Some common example of adjuvants includes benzodiazepines, corticosteroids, antidepressants, and local anesthetics (Gurung, 2014). Nonopioids, on the other hand, include many of the over-the-counter pain relievers, such as ibuprofen, aspirin, or acetaminophen. According to Gurung (2014), “these medications act locally, often at the site of pain” (p. 291) and provide quick-acting, short-term relief in milder forms of acute pain. However, nonopioid drugs are generally not recommended for continued use due to the many long-term side effects associated with these drugs and their inability to maintain pain relief over time.

A stronger category of medication, known as opioids or narcotics, are much better suited for more severe pain management, particularly for those undergoing a surgical procedure, have suffered a severe illness or injury, or are living with a chronic or debilitating illness. Some well-known examples of opioids include oxycodone, codeine, morphine, and methadone. Opioids are the drug of choice for moderate to severe pain, given their level of effectiveness. Morphine, for example, works by binding to the “receptors in the periaqueductal gray area of the midbrain and produces pronounced analgesia and pleasant moods” and mimics the body’s natural response to coping with pain (Gurung, 2014, p. 291). However, opioids come with their own set of side-effects that are often much more severe than nonopioid medications. For instance, there is a much higher risk factor for overdose or addiction, and individuals who take opioids for chronic pain management often build up a large tolerance to these types of medications. Therefore, in order to gain the same benefit, patients also need to increase the dosage of the drug which places them even further at risk for the potential of overdose or addiction. Nonetheless, the controversy over the effects of long-term opioid use is a hot topic of debate in both the medical and chronic illness communities.

Still, there are a number of physiological techniques, outside of medications, that also assist with pain management strategies. Some examples include acupuncture, surgical interventions, and the use of either hot and cold compresses (and even alternating the two). Acupuncture, for example, works to manage pain by releasing blocked energy associated with pain and has been used in Traditional Chinse Medicine for years (Gurung, 2014). Alternately, surgical treatments can also help in decreasing levels of pain by removing the conduction of many of nerve fibers throughout the body that directly or indirectly transmit pain signals to the brain. However, while surgical approaches typically provide relief of pain for a period of time, improvement does not seem to provide a long-term cure since nerve fibers’ have the ability to regenerate. Still, while the majority physiological techniques offer relatively good methods in managing acute forms of pain, psychological strategies for the management of pain are likely to be more effective for handling chronic forms of pain.

Research into various psychological techniques shows that many of the pain pathways found within the human body are directly linked to the brain, ensuring that pain is very much a psychological process in addition to being a physiological one as well. A person’s mood can greatly impact how individual’s cope with or experience pain and altering one’s cognitions about chronic pain is, therefore, detrimental to obtaining control of individual levels of pain. For instance, when a person is undergoing chronic stress or is depressed, they are likely to feel more pain. According to Gurung (2014), “negative mood states can lead to biased forms of thinking. These cognitive biases can accentuate the feelings of pain and need to be modified” (p. 294).  Often, these behavioral modifications come from the use of psychological techniques (e.g. hypnosis, distraction methods, and relaxation techniques) in a similar manner to the practices associated with coping skills for dealing with stress. Distraction techniques, for example, are helpful in handling pain because it diverts attention away from the problem, similar to stress management techniques, and includes the use of some common practices like guided imagery, meditation, or watching television, reading a book, or talking with a friend over the phone. Likewise, biofeedback is also helpful in identifying pain triggers through observing physiological responses to pain through the use of machines or computers and then teaching relaxation techniques in order to assist individuals in gaining control of their physiological reactions to pain.

Although both psychological and physiological approaches to pain management procedures are helpful in their own ways, neither necessarily define the “best method” for handling pain—at least, not alone. Essentially, the primary problem in defining a standard method of pain management is the fact that the experience of pain is mostly subject. Although tests are available to measure specific fragments of pain, currently there is no exam available that can objectively measure pain with any amount of accuracy. Also, since both physiological and psychological factors influence the involvement of pain, it’s hard to distinguish which variables are positively or negatively altering elements of pain and individual levels of pain can change day-by-day. Given the number of factors involved, perhaps a better method for managing pain is to utilize a dual approach by combining both psychological and physiological techniques.

One way to combine both pain management strategies is through a technique known as self-management, which has been particularly supportive of individual’s living with chronic episodes of pain. Self-management programs are defined as “treatments for pain relief that make the patient with chronic pain the one with the most responsibility for making the change rather than the doctor or the health professional staff” (Gurung, 2014, p. 452). Self-management programs for chronic pain are effective because they focus on the emotional aspects of pain, outside of the physiological response, by teaching patients to change their thoughts or behaviors to better cope with their pain – mainly by focusing on various strategies to improve one’s overall quality of life. According to Gurung (2014), the main goals of self-management programs are to:

  1. Provide skill training to divert attention away from pain;
  2. Improve physical condition (via physical reconditioning);
  3. Increase daily physical activity;
  4. Provide ways to cope more effectively with episodes of intense pain (without medication);
  5. Provide skills to manage depression, anger, and aggression; and
  6. Decrease tension, anxiety, stressful life demands, and interpersonal conflict. (p. 297).

Gender Bias of Pain:

It’s important to point out a very significant problem currently plaguing patients across the country — the gender bias in medicine. Although this problem is not exclusive to pain management, the gender bias in medicine is alarming because many women are often left without the proper care essential to maintaining a good quality of life.

It’s become far too common that women’s complaints of pain or illness are minimalized by the medical professionals they turn to for help, often implying that women are overly dramatic in their interpretations of pain. Doctors often label many of the pain symptoms found in women as being psychosomatic or “all in their head” when a diagnosis is not easily obtained. This bias becomes even more evident in women who have chronic pain, who continue being called a “drug-seeker” when asking for pain relief. “Women are more likely to have chronic pain conditions that are more difficult to diagnose and treat (TMJ Disorder, fibromyalgia), and in many cases, these are treated as mental or hormonal rather than as a disease or disorder” (Stacey, 2012). Likewise, many doctors still foster the ideology of the gender bias by suggesting that women are affected by pain harder than men.

According to Gurung (2014), “women reported significantly higher pain in most categories with the most significant differences in patients of the musculoskeletal, circulatory, respiratory and digestive systems, followed by infectious diseases, and injury and poisoning” and “men report less pain, cope better with pain, and respond to treatment for pain differently than women” (p. 274) However, at least in their initial presentation, these statements are somewhat misleading. At best, research is relatively and widely varied. Recently, an article I came across by Dusenbery (2015) called Is Medicine’s Gender Bias Killing Young Women? described this phenomenon in detail:

This pervasive bias may simply be easier to see in the especially high-stakes context of a heart attack, in which the true cause usually becomes crystal clear—too often tragically—in a matter of hours or days. When it comes to less acute problems, the effect of such medical gaslighting is harder to quantify, as many women either accept misdiagnoses or persist until they find a health care provider who believes their symptoms aren’t just in their head. But it can be observed indirectly: In the ever-increasing numbers of women prescribed anti-anxiety meds and anti-depressants. In the fact that women make up the majority of the 100 million Americans suffering from (often under-treated) chronic pain. In the fact that it takes nearly five years and five doctors, on average, for patients with autoimmune diseases, more than 75 percent of whom are women, to receive a proper diagnosis, and that half report being labeled “chronic complainers” in the early stages of their illness. Then there are the diseases, like chronic fatigue syndrome and fibromyalgia, that exist so squarely at the overlap of the Venn diagrams of “affects mostly women” and “unknown etiology” that they’ve only recently begun to be recognized as “real” diseases at all.  (para. 20)

There are some valid explanations for why pain across gender is inconsistent. In a study by Hamberg, Risberg, Johansson, & Westman (2004), for instance, it was found that “proposals of nonspecific somatic diagnoses, psychosocial questions, drug prescriptions, and the expressed need of diagnostic support from a physiotherapist and an orthopedist were more common with females” (para. 3). However, laboratory tests, physical examinations, diagnostic testing, and pain management were offered to men more often than it was for women patients. Additionally, the differences offered in treatment could result in the many inconsistencies demonstrated throughout the literature as to how men and women are different when it comes to pain. Furthermore, the gender difference may be the direct result of our modern culture expect men and women to experience pain. We often encourage women to express their feelings about pain, yet make them feel like they are crazy or are behaving like a hypochondriac in following the expectation. Alternately, society tells men to hide their emotions. So of course, it’s easy for “science” to say that women have more reported pain than men because females are more likely to confess about their experiences of pain, skewing the results and furthering the gender bias. At the end of the day, I do believe that Dusenbery (2015) stated it best by saying, “call me crazy—hysterical, even—but I don’t think you should have to feel that empowered just to receive proper medical treatment” (para. 20).

References

Dusenbery, M. (2015). Is Medicine’s Gender Bias Killing Young Women? Retrieved on Feb 16, 2016, from http://www.psmag.com/health-and-behavior/is-medicines-gender-bias-killing-young-women.

Gurung, R. A. (2014). Health Psychology: A Cultural Approach (3rd ed.). Belmont, CA: Wadsworth.

Hamberg, K., Risberg, G., Johansson, E.E., & Westman, G. (2004).  Gender bias in physician’s management of neck pain. Journal of Women’s Health & Gender-Based Medicine, 11(7): 653-666. doi: 10.1089/152460902760360595.

Stacey (2012). Is There Gender Bias in Pain Management? Retrieved on February 16, 2016, from http://www.tmjhope.org/gender-bias-pain-management/


To find out how you can receive FREE online therapy to manage chronic pain, please visit the following article on the Better Health website:

https://www.betterhelp.com/advice/therapy/get-free-online-therapy-should-you-use-free-counseling/