10 Ways That Living with a Chronic Illness is Like Training for the Olympics

Update 8/18/2016 – This article was featured on  TheMighty.com website on August 9, 2016, which is such a huge honor. Thank you all for your continued love and support.

If you’d like to read the shorter, edited version of this post on The Mighty’s Website, please visit https://themighty.com/2016/08/how-training-for-olympics-is-like-having-a-chronic-illness/


As a patient who has not only been diagnosed with multiple rare forms of chronic illness and as a former athlete that competed on the national level in swimming,  I feel that I offer a unique perspective as to how some aspects of day-to-day life are quite similar between the polar opposites of having a chronic illness and training to compete in the Olympics. Here are some of the

Top 10 Ways That Living with a Chronic Illness

is Like Training for the Olympics:

10. You’re friends and family don’t understand why you never hang out with them. 

Obviously, training for the Olympics requires a great deal of  time and dedication. In an effort to become one of the top athletes in the country,  sacrifices have to be made and one of the first things to go is generally your social life. Spending months at a time at training camps or traveling for competitions takes you away from your family and most days it was far too tiring to even think about going out and socializing with my friends, let alone actually doing it.

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Now that I have a chronic illness, there are days when I can barely walk to the bathroom by myself, let alone take a shower. I’m lucky if I make all of my scheduled doctor appointments or medical tests even though I have assistance in getting there since I can no longer drive. Having a social life on top of it – that’s honestly asking too much of myself. The majority of people can’t understand how truly difficult it is to do the basic things that many people take for granted, such as going to the grocery store or cooking dinner. When you become sick while still young, though, the discrepancies between living a so-called normal life and that of “the sick life” are far more dramatic in comparison. Friends just simply don’t have the capacity to comprehend why their formerly “fun friend” is suddenly stuck at home on the couch. As they say – you don’t really get it until you get it.

9. You’re always tired, regardless of how much you sleep. 

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When you’re working your body hard, either to make your Olympic dreams come true or to merely make it through the day, fatigue seems to have a tendency continually build up to the point where you don’t know what it’s like to NOT feel tired anymore. No matter how much you sleep – it could be 8 hours, 12 hours, or 2 hours – it all feels the same.

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Professional athletes are likely to suffer from a condition called Overtraining syndrome (OTS) if they work themselves too hard over a long period of time. As Kreher & Schwartz (2012) explain, “athletes train to increase performance. Performance increases are achieved through increased training loads. Increased loads are tolerated only through interspersed periods of rest and recovery—training periodization. Overreaching is considered an accumulation of training load that leads to performance decrements requiring days to weeks for recovery. Overreaching followed by appropriate rest can ultimately lead to performance increases. However, if overreaching is extreme and combined with an additional stressor, overtraining syndrome (OTS) may result. OTS may be caused by systemic inflammation and subsequent effects on the central nervous system, including depressed mood, central fatigue, and resultant neurohormonal changes” (p. 128). However, depending on the pathophysiology and etiology of the condition, a number of treatment options are available, including hormone therapy, cognitive or physical therapies, stress management, and prolonged periods of rest.

Prolonged fatigue in chronic illness generally comes from the medical condition itself but other factors that come along with  the illness can also influence a person’s physical, emotional, and social lifestyle in a way the creates additional fatigue as well. For example, sleep patterns can be affected by conditions like dysautonomia or autoimmune disease. While there are some strategies available for managing the fatigue that result from the various conditions of having a chronic illness or pain, once again it really just depends on the type of condition that is causing it. Delegating duties to friends or family members, practicing stress-reducing technique or and good sleep behaviors, and taking a lot of breaks throughout the day can help to a degree. In most cases, though, chronic feelings of fatigue cannot be cured or treated unless  the underlying condition is cured or goes into remission.

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8. You’re usually awake to see the sunrise.

Olympians often start training in the early hours of the morning, long before the rest of the world is even awake.

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Those with a chronic illness are often awake this early in the morning as well – mostly because they haven’t gone to bed yet due to high levels of pain or because they spent most of the evening lying on the bathroom floor.

7. You’ve become really good at hiding how you  really feel.

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In order to be seen as a “good sport”, athletes sometimes have to cover their disappointment in their performance by shaking the hands of their opponent.

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Those with chronic conditions tend to hide their illness by responding that they’re “fine” while they keep a smile on their face, even though they may feel like they’re dying on the inside.

6. It’s just like having a full-time job but without the weekly paycheck.

Potential Olympians train both day and night to achieve their dreams of competing in the Olympics. When I was in training, I’d have practice in the morning before school, strength and/or weight training immediately after school, and then practice again in the evening before I went home to do homework and rush off to bed. Also, I either went to practice or to a competition on both days of the weekend as well.

As a chronic illness patient, I spend most of my time calling doctors offices, faxing recordings, fighting insurance companies, researching treatment options, and recovering from various surgeries or treatments that are often difficult in and themselves. I also spend a lot of time going from one appointment to another, shuffling from one specialist to another, going through this medical test or that treatment plan, one hospital visit after another hospital – it’s exhausting.

5. You make plans way ahead of time.

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When you’re training for the Olympics, everything is planned months ahead of time – sometimes even years in advance. This includes everything from what competitions you’ll compete in and the travel plans to go to such events to the training schedule you follow throughout the year.

Making plans when you have a chronic illness also requires a lot of preparation. As a rule, I try not to commit to anything unless I absolutely have to. On those rare occasions that I do make plans to hang out with  friends or family, every detail is planned out way ahead of time and every potential or possibility needs to be accounted for. However, considering that most of my symptoms can change substantially in the blink of an eye, most efforts to plan anything are basically futile. More often than not, I have to cancel these plans at the last-minute anyways – leaving me to feel guilty or worthless because of my illness.

4. Proper nutrition and hydration are imperative to your ability to function.

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One of the most important elements of training for the Olympics is good nutrition. If you want to reach your peak performance, it’s import to follow a well-balanced diet. It’s  also important to stay hydrated both before and after practice so that you don’t become ill or injured simply by losing important nutrient and electrolytes from pushing your body passed its  physical limitations. According to an article in Men’s Fitness Magazine (2014), “for Olympic-level performance and off-the-chart energy, you must eat properly including eating a breakfast of complex carbohydrates and lean protein, then eat again every 3-4 hours and within 90 minutes of working out. Consume half your bodyweight in fluid ounces of pure water and if exercising intensely or for long duration, consume a sports-drink to replenish electrolytes” (para. 2).

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Similarly, some of my diagnosed conditions require extreme effort and dedication to dietary guidelines in order to thrive. For instance, my vascular surgeon identified that has malnutrition after years of not really eating due to a combination of pain and early satiety caused by a rare condition called Superior Mesenteric Artery Syndrome (or SMA Syndrome). In order to survive the life-saving surgery that I need in the upcoming months, I was sent to a dietician to bring up my nutritional blood screens so that I could have the surgery to fix the compression of my SMA, as well as the other three rare vascular compression syndromes I have as well, including Nutcracker Syndrome, May-Thurner Syndrome, and Pelvic Congestion Syndrome. However, because the third portion of my duodenum is being compressed by the SMA, food becomes obstructed as it tries to move into my small intestines.Therefore, the dietician had to be somewhat creative in prescribing a diet of foods that could move past the compression. Currently, my daily dietary regimen consists of:

  • Multiple “shots” of either a protein shake or Carnation Breakfast Essentials (I do “shots” because I can’t drink 8 to 16 oz a day in one or two sittings without getting sick).
  • 2 small jars of organic baby food – levels 1 and 2 only.
  • 1 pouch of pureed baby food
  • 2 tablespoons of peanut butter.
  • 2 high-calorie coffee drinks from Starbucks (to maintain/gain weight).
  • 1 yogurt packet.
  • As many pretzels, crackers, or chips I can handle.
  • Popsicle or Italian ice – only if I can manage it as well.

For another condition, Postural Orthostatic Tachycardia Syndrome (or POTS Syndrome), I require a high intake of  both water and electrolyte drinks (e.g., Pedialyte) to help increase blood volume and prevent dehydration, along with a high sodium (or salt) diet to keep my blood pressure  high enough so that I don’t faint multiple times in a single day .

All day long, all it feels like all I do is eat and count calories. One bite here, another sip there – it’s honestly exhausting! Especially when you spent years actively avoiding food since it was the source of so much pain.

3. You prepare yourself to be strong mentally.

In any form of competition, you have to be strong not only physically but mentally as well. According to an article by Sports Psychology Today (2011),”mental preparation helps athletes achieve a focused, confident and trusting mindset to help them compete at their highest level” (para. 2). While some athletes use meditation, others prefer to listen to music for motivation. I always preferred visualization when I was able to compete. As Handel (2012) explains, “in preparation for a game, athletes will run through different situations in their imagination as a kind of mental rehearsal. This way, when they are confronted with the situation in real-life, their mind is already primed to respond to the situation in an effective way…Contrary to common misconceptions, visualization is most effective when athletes focus on the process rather than the outcomes” (para. 11 and 13)

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Essentially, I use this very same strategy to manage life as a professional patient as well. After years of doctors telling me that my symptoms were caused by anxiety or depression, I mentally prepare for all appointment by preparing notes and deciding what I want to say ahead of time. Then I formulate counter-arguments based on current medical research to make sure that my concerns are taking seriously. Sometimes I need to prepare myself mentally before I gain enough courage to go ahead  with a certain medical test or an experimental treatment plan simply because it makes me nervous for whatever reason. There are some days that my symptoms can be so bad that mental preparation becomes necessary just to make it out of my bed.

2. You can handle high levels of pain like a champion.

For the most part, nearly every competitive sport out there involves feeling pain in some, way, shape, or form. For instance, pain and injury could result from overworking yourself during practice or you could suffer a really bad head injury during competition. Although I never personally got severely hurt in competitive swimming, aside from the ocassional ear infections and a pulled muscle or two, other sports I did over the years did result in extreme forms of pain and injury. In cheerleading, for example, I suffered from 6 concussions, a broken nose, a fractured jaw, and two broken ankles – all in the span of a single season. Even with broken bones, though, I still performed  because I was the captain and I didn’t want to let my squad down.As the old adage goes, no pain – no gain, right?

It is the same with chronic illness. Often we feel pressure to do things we know we shouldn’t do but we do anyways because we either feel guilty or think that it’s an expectation. Additionally, since we experience high levels of pain almost each and every day, we have learned to handle our pain much better than the average person. When I started receiving Botox injections for migraines, for instance, my neurologist commented about how I was her favorite patient because I didn’t even flinch once as she injected needles into various places across my face, forehead, and neck. I’ve also had nurses surprised that I would barely move when they would blow a vein during a catheter placements or the fact that I didn’t cry when I had a biopsy taken from my scalp without any form of sedation (not even a local), which was later cauterized with colloidal silver instead of the normal placement of sutures. Really, it’s not that you don’t feel the pain anymore – it’s just that you handle pain better now because you’ve dealt with it for so long.

1. There’s strong camaraderie between you and your team members/fellow spoonies.

When the entirety of your life is spent training and competing, often the only people you get to see regularly is your fellow team members. Basically, they become your new family since you spend every waking moment together and they understand what you’re going through.

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When you’re sick, it can be hard to relate to people who are healthy. We feel judged by others because of our illnesses and most people can’t understand what it’s like to be chronically ill. This includes the majority of  our closest friends, family members, and doctors as well. The only people who get it are other spoonies or warriors that have gone through what you’ve gone through, and therefore  understand where you’re coming from.The chronic illness community offers a lot of support to members because we all know what it’s like to be alone or afraid. We’re so tight-knit that we have developed our own language, laugh at our jokes, and establish rules that most outsiders are unlikely to be conscious of unless they’re given an explanation. Even then, it’s hard to understand because they have experienced as much as we have. In a way, it makes up for all that’s been lost to chronic illness. Like a secret society, but one that nobody chose to join by their own accord – it’s simply involuntary recruitment into this life.



References:

Edger, M. (2011). Five tips for mental preparation. Sports Psychology Today. Retrieved from http://www.sportpsychologytoday.com/youth-sports-psychology/five-components-of-mental-preparation/

Men’s Fitness Magazine (2014). Fitness Secrets of Olympic Athletes. Retrieved from http://www.mensfitness.com/training/pro-tips/fitness-secrets-of-olympic-athletes

Handel, S. (2012). The Emotion Machine. Retrieved from http://www.theemotionmachine.com/4-mental-exercises-olympic-athletes-use-to-gain-that-extra-edge

Kreher, J.B. & Schwartz, J.B. (2012). Overtraining Syndrome: A practical guide. Sports Health, 4(2), 128-138. doi:  10.1177/1941738111434406

It’s Alright Not to Feel Okay…

For the most part, I try to stay positive about what I post on this blog. But, as most of you already know, life with a chronic illness is hard and it is definitely not always sunshine and rainbows as one might think – although I do believe that both would make things slightly easier to handle, don’t ya think? Nevertheless, there are just some things that come along with living “the sick life” that truly shake you to the core sometimes. For me, it’s hearing about other patients that have the same (or similar) diagnosis and have passed away as a result. I posted the following on my personal Facebook page a little while ago but felt it was important to share on this page as well. Sometimes you just have to say what’s on your mind because it’s good for the soul. In a way, venting allows me to grieve – not only on behalf of those that have passed but also for myself.


Sometimes I get so tired of hearing about my fellow warriors dying because their pain was not taken seriously or they couldn’t find the help that they needed. It’s becoming way too common lately and just thinking about how others have been treated because of their illness – hell, how I’ve been treated at times – makes me both physically and emotionally sick.

Trust me when I say that majority of people can’t even begin to comprehend the level of pain that those of us with vascular compressions live with each and every day. Or how much has been lost as a result of illness? Although I don’t necessarily agree, I can absolutely understand why many have chosen to take their own life.

Honestly, I’ve been lucky. It took a lot to just simply survive. Being misdiagnosed could have killed me. So could have all the wrong medications, treatments, and surgeries that have been offered to me along the way. I had to educate myself and challenge my care at every single step along the way. I’ve had to stand up to my doctors. I’ve had to fire some doctors. I’ve had to prove myself over and over again – prove that I was, in fact, sick; that I wasn’t imagining the pain – just so that my concerns would be heard and taken seriously. So that someone would help. Basically, I’ve had to fight with every bit of strength left inside of me just to get to where I’m at today – and no, I’m not better yet.

Obviously, this hasn’t been easy and I’m still in pain almost every day. Yet, somehow, I still hear that I’m not actually sick or that I’m not sick “enough”, even though test after test show’s that something’s seriously wrong and has been for a while. Eventually, something has got to give in the way we do medicine, especially when it comes to managing chronic or rare conditions. The gender bias in treating young women needs to stop as well.

No, it’s not anxiety! It’s not depression! And it’s definitely not in my goddamn head! These conditions are real and you would know that if you took a minute to listen.

Mostly, though, I’m angry – angry that this is somehow okay; that this is acceptable. I’m also incredibly sad as well. These tragedies could have been avoided. Most of these deaths are senseless. Something could have been done. The worst part, however, is that nobody cares. I repeat: nobody gives a damn.

Do you think the doctors cared when they heard that their patient had died? I doubt it.

Do you think the friends or family members who left when the person became ill and couldn’t get out anymore really cared? Not enough, obviously.

What about all the other people in their life who judged them, told them to try harder – to do more – to be more- to stop being lazy? Do you think they cared at all, really?

I cared, though… I still care.

Part of this is selfish, though, because I think about how easily that could have been me – and could still be me someday. I hear about the others just like me dying so frequently lately that the idea of death no longer scares me – it’s just par for the course at this point. How sad is that? I tell you, having a chronic illness makes you jaded.

I’m really trying not to be negative, but I’m so incredibly frustrated and disgusted that I just needed to vent. I just hope someone out there is listening.

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Whenever you need or want somebody to listen, I’m here. Just send me a message either here or on the Undiagnosed Warrior Facebook Page – I’d be more than happy to hear your story anytime.

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National Suicide Prevention Lifeline Magnet, SVP05-0126

National Suicide Prevention Lifeline Magnet

Please keep fighting fellow warriors!

When your online chronic illness friends just get it

I have some really amazing friends in real life, don’t get me wrong. I have a lot of love and support coming from both my friends and family who have been quite patient with me as I navigate this uncharted life of chronic illness. However, the one good thing that comes with being sick (perhaps the only good thing about it actually) is all of the amazing people I have connected with online, both in the support groups on Facebook and here on my blog page.

Seriously, I’ve been so lucky to have the opportunity to talk to some of the strongest people imaginable… that have fought for everything in their life. I’ve heard stories from other patients that were anywhere from awe-inspiring and uplifting to ones that tore me apart with sadness, but I am grateful for them all because I find a piece of myself in each and every one of them.

Still, the other night I was again reminded how important my online friends are for me in learning to cope with the life I’ve been handed. I know my friends and family try to understand what I am going through, and for the most part, they do get it as much as they can, but as the saying goes “no one really gets it until you get it.”

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For instance, I was actually feeling a little lonely the other night and was in a lot of pain from trying to eat earlier that day. While I can’t say that the following two conversations I’m about to share actually made the pain go away, they did, however, lift up my spirits and reminded me that there are so many people out there that just understand how silly, crazy, and ironic the “sick life” really can be – and humor goes a long way these days.

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After discussing the possibility of going back to work if I can ever get myself better, the first conversation went as follows…

Conversation #1 

Me: I don’t have one to quit currently so…

J: Well then you have nothing to lose

Me: Exactly. Or maybe I’ll join the circus. My options are wide open at this point lol

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J: You could become a wrestler

J: The Undiagnosed Warrior!!

Me: I’m too short I think lol but I did belong to backyard wrestling in my heyday

J: That’s where most of the pros start

J: Your finishing move could be the Nutcracker lol

Me: Oh my God! Yes. I’m going to make a promo video asap

J: Lol I can’t wait to see it!

Me: That’s too funny

J: You could be like “Don’t make me go May-Thurner on your ass!” Lol

Me: That’s why it would be so funny!
Me: It world be a good awareness project maybe
J: Exactly
Me: Not sure how long of a career I’d have
Me: I’ll just do one cameo
Me: Then a horror film based off of the Nutcracker ballet
J: Then after you get everything fixed you can be The Ultimate Diagnosed Warrior.
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J: I‘m telling you this could make you famous lol

Conversation #2 

(You may have seen the comments on my previous post)

E: I’m so glad you got that radiologist to look at your scans!!!!!! Take your husband with you and that fantastic image printed out in an 8×10 to put on the last page of the radiologist report as an “oops how’d that get there?”😉 just kidding, but it’s fun to think about those things sometimes!
I’m sorry your doctor’s abuse you so badly, but now hopefully you can get the help you need.
Love and gentle hugs!!

Me: Thank you. And actually, a poster size print out is not a bad idea. Maybe I’ll make a presentation image by image to prove my diagnosis lol

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E: Print it on the back of a tee, it’ll be a great “mic drop” effect as you leave her office!😛
Walking into a Dr office with one of those tri-fold poster board things would be so funny, or a flip chart. Totally retro. Just to make sure you don’t lose them with this crazy new thing called technology since they obviously don’t know how it works (hence missing the blatantly obvious scan results). I’m dying! Just “listen here doc, I flipping told you so, and this appointment that I paid you for is going to be me proving it” LOL!

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Me: Oh my God! I can’t breathe. That would be epic, right? I’m pretty sure they sell flip charts at Office Depot, no? Ohhh, I can even bring in those fancy smelly markers from back in pre-k and draw pictures. Maybe even a Lazer pointer? Okay… The Lazer pointer may be too much… but still.

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E: They definitely still sell flip charts and scented markers!!!! Do it! The laser pointer may be a little over kill unless the office is massive, but the rest is perfect! If she’s gonna be such a jerk and waste your time and money like she did you should totally do SOMETHING hahaha😛
OMG I’m dying. Man. If you even make it just as an art therapy thing, even without actually taking it, I totally want photos!!!! Priceless

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Me: Haha maybe that’ll be my art project for my week off of school 😀


At the end of the day, having someone who’s been there and really gets it is necessary when you have a chronic illness. Sometimes it’s the little things, even something as simple as funny or silly conversations, that make even the difficult times much more bearable and a heck of a lot less lonely. Plus, if other people “don’t get it” or they think you’re just being weird, you can always both blame it on the meds, right?

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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/

There’s Hope In Front Of Me

Does everyone with a chronic illness feel like they’re drowning in medical appointments or is it just me?

Lately, it feels as if they’re never-ending…

Take this last week, for example – I had 6 medical appointments. The week before, I had 6 appointments as well. This upcoming week, I have 5 scheduled. I originally had 7 but I was released from physical therapy on Friday (long story, which I’ll update at another time). All  of April was pretty much the same thing and the rest of May isn’t looking that much better. Honestly, I’m so exhausted from trying to manage all of these appointments and there is barely  time to think, let alone do, much of anything else (e.g. school work). It feels like I’m never going to get a break at this point – and it’s really not helping my symptoms either. The only good part is that we’re finally starting to make some progress.

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I have a few new diagnoses and some possible new treatment options to look forward to, including the possibility of a few surgeries. Although I was skeptical at first, 2016 does seem to be my year after all – it just got off to a slow start I guess. If nothing else, all of this forward motion has given me hope once again.

Hope In Front Of Me

By Danny Gokey

I’ve been running through rain
That I thought would never end
Trying to make it on faith
In a struggle against the wind
I’ve seen the dark and the broken places
But I know in my soul
No matter how bad it gets
I’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me
There’s a place at the end of the storm
You finally find
Where the hurt and the tears and the pain
All fall behind
You open up your eyes and up ahead
There’s a big sun shining
Right then and there you realize
You’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me
There’s a hope still burning
I can feel it rising through the night
And my world’s still turning
I can feel your love here by my side
You’re my hope
You’re the light, I still see it
Your hands are holding me
Even when I don’t believe it
I’ve got to believe
I still have hope
You are my hope