Strategies for Neurotypical People to Develop Empathy for Autistic People

Historically, there has been much debate about the extent to which autistic individuals experience empathy. I am using the phrase “autistic individuals” rather than “individuals with autism,” per the recommendation from the Autism Self-Advocacy Network. Recent studies indicate that while autistics may experience and demonstrate empathy in different ways from neurotypicals, they do indeed experience it, sometimes to intense degrees. The debate is well summarized here.

Empathy image credit here

Throughout this discussion, I have observed a curious and glaring omission: what about how and whether neurotypicals empathize with autistics? One of the basic tenets of social skills is reciprocity, an attunement to the back and forth nature of social interactions. If we are examining how well autistics display empathy towards others (the majority of whom are neurotypical), it is only fair to ask how and whether neurotypicals are extending the same courtesy back

In my work as a school-based occupational therapist, I make a conscious effort to develop empathy towards the autistic children I serve. It allows me to effectively tailor my approach to a child’s unique needs, helps us develop a stronger connection, and shows that I am honoring their humanity.  So, how can a neurotypical person best develop their empathy skills towards an autistic person’s experience of the world? The old saying, “If you’ve met one autistic person…you’ve met one autistic person” comes to mind. There is no one-sized fits all answer, but I will share my top four strategies below. While my strategies are geared towards children, many can be applied to adults as well. I would love to hear readers’ additional ideas and strategies in the comments section!

1) Read Autistic Individuals’ Memoirs and First Person Narratives

I have found first person memoirs to be invaluable in deepening my understanding and empathy for autistic experiences. My favorite books of this nature include:

Additionally, the following blog posts and websites have powerful first person narratives about what it is like to live with autism (see additional links in numbers 2-6 below as well):

  • Power of Words – This video exposes some of the harmful ways that neurotypicals choose words to describe autistics, in ways that can be hypocritical. For example, an autistic child might be seen as “stubborn” or “noncompliant” when they refuse a non-preferred activity, whereas a neurotypical person would be labelled “persistent.”
  • Quiet Hands – This powerful first person narrative about what it feels like to told to quiet one’s “stimming” or “flapping” hand behavior has helped change my perspective on the ethics of a purely behavioral approach to extinguishing these behaviors, when they might serve a purpose to the child and therefore be extremly painful for the child to stop doing.

2) Understand Sensory Processing Issues Commonly Experienced by Autistic Individuals

Imagine a specific environment that is extremely overwhelming for you in terms of sensory and emotional overload, such as the airport or airplane. For me, airports contain the perfect storm of specific fear triggers (such as fear that the plane will run late and safety concerns), in addition to many uncontrollable sensory demands of the environment (too loud, too hot or cold, noxious smells that I cannot escape from, a generally confining environment that is very hard to control, unsavory food, etc).

Sensory overload at the airport.

In order to further develop empathy for autistics, I ask myself: what if I had to perform the complex tasks I do every day in the presence of intensely aversive sensory stimuli, such as the airport? How would that affect my ability to focus and maintain a calm, alert state rather than feeling anxious and overwhelmed? This is relevant because every day, when an autistic child attends school, they may be entering an environment they find as overwhelming as I find the airport/airplane. It’s easy to see that being expected to perform well in the presence of aversive sensory stimulation quickly puts one into a fight or flight state, which is not ideal for academic or social-emotional learning.

The concept of “sensory overload” is a tad more complex than it may appear on the surface. Sensory processing is the way in which our brains perceive, organize and make sense of sensory input from the five commonly known senses (sight, sound, touch, taste and hearing) in addition to three “hidden” senses: proprioception (body awareness, or our understanding where our body parts are in space), vestibular (balance and motion sense, which starts in our inner ear but can affect many other systems including emotional regulation), and interoception (our internal body sense of items such as hot, cold, pain, hunger and thirst).

For many neurotypical individuals, sensory processing happens unconsciously and smoothly for the most part. As we grow, our brains develop the ability to filter out unnecessary input and to develop “just right” thresholds so that we can function in our daily lives. For example, an elementary student may filter out background noise in the cafeteria in order to focus on a conversation with friends and fluidly shift their focus back and forth between the taste and touch sensations involved in eating, the auditory qualities of the conversation, the visual stimulation of the food, the tactile stimulation of the child’s clothing, other children and background movements, and the body awareness and balance demands of sitting, reaching for foods, and accurately placing them in the mouth.

For autistic individuals (and those with a variety of other neurological differences), however, it is well documented that something happens differently in this process, which results in the individual being either “hypersensitive” (detecting and responding to small amounts of input), “hyposensitive” (requiring more input to evoke a response), or a combination of both (most commonly).

Continuing the cafeteria scenario, a child may be hypersensitive to input to the degree that they are distressed by the feeling of the food in their mouth or on their hands or lips, uncomfortable with the feeling of the cafeteria chairs, and overwhelmed by the auditory overload of the lunchroom. A hyposensitive child might have difficulty with sensing where their body is in space, leading them to accidentally bump into others, and they might not perceive that there is food remaining on their lips after the mealtime (which adversely affects them socially). At either end of the spectrum, the child’s potential to participate fully in lunchroom activities is disrupted.

It is important for neurotpyicals to examine the extent to which sensory sensitivities are affecting an autistic person’s experience of life every second of every day in order to truly empathize with their experience of the world. In addition to the airport analogy provided above, I recommend you do the following:

  • Watch videos that are specifically designed to allow the watcher to step into the shoes of an individual who has autism and severe sensory challenges. “Carly’s Café (created by a teenager with autism),” and “Can you Make it to the End?” (which is part of the “Too much Information campaign by The National Autistic Society of the UK) are both fabulous examples.
  • Examine your own sensory sensitivities and visualize what life would be like if they were more extreme. You can complete the Adult Sensory Motor Preference checklist from the Alert Program, and reflect on your sensory patterns. For example, when I did this, I realized that I have fairly severe smell and auditory sensitivities, to the extent that I find it very difficult to focus or stay emotionally calm in the presence of an aversive smell to me (such as smoke, animal smells, or garbage) as well as aversive sounds (such as the sound of someone else chewing, high pitched sounds, or whining).
  • Learn more about sensory processing and sensory challenges. Talk to your local occupational therapist to learn more about sensory processing and sensory issues that might be affecting your loved one with autism, or read more at STAR Institute.

3) Consider the concept of asynchronous development and challenge your understanding of “high functioning” versus “low functioning autism”

It is crucial for those who work with and love autistic individuals (and those with many other unique neurological profiles, including giftedness) to understand the concept of asynchronous development, which simply means that an individual may have a variety of vastly different abilities across different domains such as motor, social, academic, and emotional skills. I’m sure most adults can look back on their own education and see that their grades and abilities were not always consistent across academic areas. We all have our strengths and weaknesses; the case is simply that for children with special needs, the discrepancy between skills areas is often more drastic than for neurotypicals.

For example, I may be working with an autistic individual who is 10 years old and attending 5th grade general education classes for 50% of the day, yet they may have the impulse control of a toddler, the mathematical and scientific abilities of 9th grader, and the fine motor skills of a 5 year-old. Even that example is a gross simplification, but in general I challenge myself to consider which specific dimension I am evaluating the child on in the moment, and whether I have realistic expectations for them. Remembering asynchronous development helps me further hone in on what is a truly appropriate challenge for a child in a certain skill area.

Simple take-home message: remember that even if a child is “high functioning” in one domain, that does not mean they should be expected to function at high levels across all domains. Rebecca Burgess depicts this concept brilliantly in her comic entitled, “Understanding the Spectrum,” where she draws a series of beautiful visualizations to show her relatively high “functioning” or skills in some areas and “low functioning” or challenges in other areas, and how those areas can be different between individuals, all of whom may share the label “autistic.”

Some additional helpful articles on the topic of asynchronous development are:

  • Twice Exceptional Students: Who are they and what do they need? Great introduction to children who are gifted in some areas and also have a learning or developmental challenge in others.
  • Autism as a Disorder of High Intelligence: Bernard J Crespi outlines a beautiful theory; in his words: “In this article I describe and evaluate the hypothesis that a substantial proportion of ‘autism risk’ is underlain by high, but more or less imbalanced, components of intelligence.” Basically, it’s a scientifically rigorous way to explore and make the case for autistic children showing asynchronous intellectual abilities (as I understand the article).
  • Understanding the Spectrum – Posting again here for those who might have skipped ahead to the additional article links!

4)  Try to eliminate the phrase, “If they would just do X” from your vocabulary

It’s not uncommon to overhear adults who work with children on the spectrum saying, “Well, if they can do X, why can’t they just do Y?” This is frequently asked with respect to performing differently on academic or attention-related tasks. “Why can they focus so well on Minecraft, but not on their writing homework? Why can they write well about topics they love, yet refuse to write about topics they don’t prefer?”

I find this line of questioning problematic. I am stubbornly passionate about the right for any human being to not be 100% consistent all the time, because that is unrealistic even for adults, much less children! As someone trained deeply in activity analysis, which is a crucial analytical approach that occupational therapists utilize, the simple but profound answer to the questions above is that the demands of the tasks you are equivalating (e.g. focusing on Minecraft versus homework) are not in fact equivalent. They are not similar tasks for the child, thus the child will perform differently.

Doing a quick empathy exercise should easily reveal this concept to you; do you perform similarly on all tasks that require a certain skill, such as focusing? Do you find it as easy to focus on a boring board meeting in your professional life as it is to focus on a thrilling movie or TV show? Will telling yourself to “just focus” on a boring meeting really inspire the same state of mind as something you’ve specifically sought because it is interesting and relevant to you? If the answers to those questions are no, then why are you expecting a child to show consistency across task domains, particularly when children often lack an understanding of the long term payoff of their school tasks?

Now, the answer isn’t to throw our hands up in the air, or let this phenomenon be an excuse for a child to not try their best even when the task is non-preferred. We all must learn to persist in non-preferred tasks. The difference is that when you approach non-preferred task compliance from the perspective of teaching a child how to persist rather than the perspective of “they just need to,” you position yourself in a supportive, teaching role rather than as a disciplinarian, which is a more humane and often more effective approach.

I strive incredibly hard to eliminate the phrase “they just need to” from my vocabulary with respect to working with individuals with special needs. The word “just” is derogatory in this context and lacks respect for the fact that every minute of every day is a challenge for many of the children with whom I work. Yes, children with disabilities are human, and all humans have moments where they don’t try their best, and I don’t want a child’s disability to become a get out of jail free card. However, in my experience kids do well if they can, and if they aren’t doing well, it’s because they legitimately lack the skills to do so, and my job is to help them acquire those skills.

How do we best help them acquire the essential skills of nonpreferred task persistence? That’s a topic for another day (and by no means do I have all the answers), but for now I will say that the most important first step is to identify what is the “just right challengefor this child, make an appropriate goal based on that, and then provide personalized self-regulation, behavioral and attentional strategies to support them in achieving it.

Conclusion

In NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, Steve Silberman wrote, “By autistic standards, the ‘normal’ brain is easily distractible, is obsessively social, and suffers from a deficit of attention to detail and routine. Thus people on the spectrum experience the neurotypical world as relentlessly unpredictable and chaotic, perpetually turned up too loud, and full of people who have little respect for personal space.”  I absolutely love this sentiment because it provokes the reader to empathize with how strange the minds of a neurotypical person might seem to someone with autism.

Human brains are pretty amazing things; I’m pictured here with my toddler son.

I became interested in working with children with special needs at a young age myself, right around middle school. I found myself fascinated by psychological, behavioral and developmental differences and wondered why some children seemed to see the world so differently than I did. Looking back now, I see that my original interest was really one of intended empathy; I yearned to put myself in their shoes and understand how the children in the resource room experienced the world. In my work as an occupational therapist in the school system today, whenever I become overwhelmed (which is often!) I find it very grounding to return to this sense of wonder and empathy. In order to determine how to best support a child, I must first attempt to gain insight into their internal mental state and motivation; at times, it leaves me with more questions than answers, but the trade-off is worth it.

Posted in developmental disabilities, Occupational Therapy, pediatric occupational therapy, social emotional learning | Tagged , , , , , , , | 14 Comments

Parenting Without Pain: Dressing and Clothing Life Hacks

I am proud to be a guest blogger with the wonderful patient resource Creaky Joints. I am currently writing a series of posts on the topic of Parenting Without Pain. The posts will tackle how parents with arthritis or other painful joint conditions can approach activities of daily living involved in caring for children in a way that minimizes joint pain.

My first topic is Dressing and Clothing Life Hacks. In this post, I cover everything from clothing selection (more zippers, less snaps!) to joint protection strategies, regardless of materials used (such as using a hand splint, as pictured below). See the link here for the full post!

splint

Posted in baby, Occupational Therapy, parenting, Rheumatoid Arthritis, Uncategorized | Tagged , , , , , , , , | 1 Comment

Childhood Memories and Lessons that Influence my Work as a Pediatric Occupational Therapist: Part 1

Reflecting back on my main priorities in elementary school: horses, and soccer.

Reflecting back on my main priorities in elementary school: horses, and soccer.

While working with school-aged children, I often find myself reflecting on how I saw the world and what was important to me as a child. Accessing childhood memories helps me identify with a child’s perspective, even if that child has a specific disability or challenge that I did not experience.  When I find myself mystified by a child’s behavior or perspective, I conjure up vivid memories of what it was really like to be a child; remembering the complexity of my social, emotional and academic experiences helps build a crucial bridge of empathy between myself and my students. 

Below, I will share lessons inspired by childhood memories that influence my daily work as a pediatric occupational therapist. My lessons are geared towards older elementary aged students who are mostly in the general education setting, as those are the children with which I currently work most often.  I had such a large flood of memories while working on this post that I decided to break it into two parts; part two will address the complexity of social relationships and more.

  1. The Importance of Connecting with a Child’s Emotional Response to their Performance.  During my elementary school years, I had an unabiding love for horses and a concurrent interest in drawing. As I grew older, I became increasingly frustrated with how badly my drawings looked compared to my vision. I had a very specific image in my mind of how I wanted to draw a horse (see below, left). However, the outcome of my drawings often looked far inferior (see below, right).  I remember sitting in the library with one of those “How to Draw” books, trying over and over to draw a good horse drawing, and never getting close to my ideal.
My ideal of a good horse drawing

My ideal horse drawing

My actual horse drawing

My actual horse drawing

 

 

 

 

 

 

Adding to my frustration and confusion, I found that adults would often praise my drawings as “so pretty!” As someone who took the opinion of adults seriously, I struggled to reconcile their positive assessment with the obviously incongruous reality. I remember concluding that they simply didn’t love horses as much as I did, so they were not attuned to the vast difference between my output and my ideal horse drawing.

The ability to accurately self-assess one’s work is a developmental skill that not all children realistically will have in elementary school. However, I can take a broad lesson from this memory: when there is a chasm between what a child does and what they aspire to do, an adult can serve the vital role of empathizing with the emotion associated with their performance, rather than attempting to soothe them or asserting that their performance is better than it is.

Attempts at horses, people, and birds

My childhood attempts at horses, people, and birds.

As an OT, I am constantly providing children with the “just right challenge,” just outside their current ability. I may rejoice clinically in their small steps towards improvement, but the child might not see it that way; they may remain frustrated, even if the incremental steps they are taking are objectively significant to me. I have to differentiate my pleasure in their progress from theirs, and identify with their feelings related to their performance in order to fully support the whole child.

This principle is well outlined in the classic book, “How to Talk so Kids Listen and Listen so Kids will Talk.” The main point is to empathize with a child’s current state and reflect it back, rather than negating it or immediately jumping to solutions. For example, if a child shows an adult a piece of work the child is unhappy with, the adult could reflect back to them by saying something like, “You’re frustrated your drawing doesn’t look how you want,” rather than, “That’s a beautiful drawing!”

I hope that the benefits of doing this are self-evident, but in case they are not, here are some reasons that this approach is beneficial therapeutically:

1) Empathizing with a child’s self-assessment not only honors the child’s feelings, it also helps strengthen the therapeutic bond between us, as the child may feel more connected and engaged due to my honoring their perception.

Just right challenge - toddler version

Having a toddler has been good practice for linking developing motor skills to frustration!

2) In examining a child’s emotional reaction to a task, I can more competently address the barriers to their success. For example, if a child is struggling with learning how to zip up a jacket or button their shirt, they might have an outburst of frustration that is more deeply rooted than it initially appears. If I open the conversation to the emotional aspect of their reaction to the task and hold space for them in the moment, I might unveil that they are frustrated because, “My little brother can already do this but I can’t, why are things so hard for me?” or “My fingers don’t work!”

As occupational therapists, we often address motor dysfunction, but I’ve found the bigger barrier to success is often the frustration built from years of feeling like a failure, or feeling confused as to why things aren’t fluid and automatic for this child, as opposed to others. In addressing the emotional component rather than focusing solely on “motor strategies,” I can address a deeper element that might free up mental space for them to ultimately achieve their motor goal more successfully. For example, I’ve had conversations that started about letter reversals for b/d, then quickly transitioned to conversations about why other children “think I’m stupid” or “don’t want to be my friend.” Everything I ask a child to do is hard for them in some way; otherwise, they wouldn’t need therapy. Doing something you’re not naturally good at is intrinsically a frustrating experience for most people, so I try to keep the emotional aspect in the forefront of my mind, even if the specific goal I am addressing is not emotionally rooted. I find that occupational therapy’s roots in mental health are a huge asset for our profession in this respect. 

3) If my own reflections didn’t convince you, consider recent research that emotions are integral to learning. As the author of the article states beautifully, “Emotions are not add-ons that are distinct from cognitive skills. Instead emotions, such as interest, anxiety, frustration, excitement, or a sense of awe in beholding beauty, become a dimension of the skill itself.” (Mary Helen Immordino-Yang). In other words, emotions are an important part of the learning process, thus they should not be shoved aside when working on non-emotional goals.

2. Children Need to Know Why They are Being Asked to do Something, or Otherwise Find Meaning in the Task at Hand.

Two of the things I loved most as a child, together in one photo: horses, and Pippi Longstocking

Throughout elementary school, my favorite movie was “The New Adventures of Pippi Longstocking” (see the trailer here).  Pippi is a free spirit whose re-introduction into traditional western society after years of living with her father on a sailing ship leaves her frequently confused. While attending school classes for the first time, she quickly becomes distressed. After misinterpreting her teacher’s questions, she tearfully asks, “Why do they ask questions when they already know the answers?” She genuinely doesn’t understand why she’d be asked to solve a problem that a teacher has already solved. 

Now, most children who have attended school from a young age understand the cultural norm that in school you will be asked questions to demonstrate your knowledge, as part of the educational process. Regardless, I keep Pippi’s experience in mind because children need to know why they are asked to perform a task or demonstrate competence. 

My sister and I were teacher's pets, but still needed to understand why we were asked to do things some of the time.

My sister and I were highly motivated to please our teachers, but still needed to understand why we were asked to do things some of the time.

In OT, our end goals are usually functional life skills where the purpose or meaning is self-evident. For example, we help a child learn to hold their pencil correctly so that they can write most efficiently with it. However, we often work on sub-skills that don’t have an obvious connection to our end goal. For example, we might have a child cross the monkey bars and complete Theraputty exercises to improve their hand strength, provide additional proprioceptive input into their hand joints, open their web space and improve body awareness prior to handwriting, to improve their long term writing endurance and precision. 

Most children I work with don’t hesitate to question why I’m asking them to do something, particularly when it’s difficult for them. When I take the time to explain the purpose of their OT activities, I get increased buy-in, engagement and compliance on the part of the child. It may feel momentarily frustrating when a child questions why I’m asking them to do something or appears to resist or defy my suggestions, but I try to really challenge myself to maximize everything I can do to help the child find meaning in the task at hand. I find that the three core innate psychological needs outlined in Self-Determination Theory are critical for me to remember when a child is struggling with motivation: competence (the drive for mastery), relatedness (the desire to connect with others) and autonomy (the need for self-determination or to actively make choices). Usually I can find a nugget of inspiration to draw from by supporting or addressing one of those three core needs. 

To explore a topical example in depth: over the last few years, some children have asked, “Why do I need to learn to write by hand if I’m going to spend most of my life typing?” There is a huge international ongoing debate within the occupational therapy and education communities about the role of handwriting in elementary school. 

I'm a big fan of keyboarding, but even I admit that 1 years old is a bit young to start!

I’m a big fan of keyboarding, but even I admit that 1 years old is a bit young to start!

 Considerable research indicates that handwriting skills are correlated with improved literacy and retention, thus all other things being equal, I see the case for writing by hand. However, all other things are not equal for most of the children I see. Many children referred to OT have significant barriers that make writing by hand much more challenging than expected. These barriers include visual or fine motor delays (such as Developmental Coordination Disorder),  language based learning disabilities such as dyslexia or Specific Learning Disorder with Impairment in Written Expression (sometimes known as dysgraphia, which can be confusing because dysgraphia can also refer to writing legibility impairments that are rooted in fine motor delays such as Developmental Coordination Disorder), executive functioning and/or attention challenges (such as ADHD), spatial reasoning difficulties, and more. When these barriers exist, I help the child and their family make the difficult decision of whether the benefits of writing by hand are strong enough to justify engaging in the laborious process of remediating their handwriting skills, when they have a potentially effective workaround right at their fingertips in the form of a keyboard.  

At a recent training on disorders of written expression by Dr. Steven Feifer (whose numerous books on learning disabilities can be found here), I was floored to learn that according to neuro-imaging, written expression is the number one most taxing school activity for a child’s brain, with reading and math being close behind. Dr. Feifer made the case for using accommodations such as typing for children with disorders of written expression in particular, to free up “brain space” that was formerly devoted to the visual-spatial and motor demands of writing by hand. Keyboarding allows for more neurological real estate to be devoted to the higher level executive functioning aspects of written expression such as language processing, organization of thoughts, prioritization, working memory, sustained attention, response inhibition, and more.  

My own writing sample from 1st grade (spoiler alert: I LOVED handwriting).

My own writing sample from 1st grade (spoiler alert: I LOVED handwriting, and expressing myself in any medium possible).

Keeping all this in mind: in deciding whether to support the child’s handwriting skills or focus on alternative strategies for written expression such as keyboarding, I must take into account not only the child’s context/environment, age, available technology tools and the extent of their underlying challenges, but also their personal values and preferences with respect to written expression in order to address their need for autonomy. Over the last few years, some students with whom I work have been highly motivated to type, and absolutely flourished with the use of school accommodations such as, “The child can type any assignment of more than 2 sentences.” The option to type has removed considerable frustration and anxiety for these children, and has allowed them to express themselves more fluidly and competently. 

I’ve also enjoyed helping other children remediate their handwriting skills, which often brings other secondary benefits. For example, if the underlying barriers are more of a visual-spatial and/or fine motor nature, improvements in these areas will logically extend to many other areas beyond writing. These students worked incredibly hard to remediate their handwriting legibility and speed, and they enjoy the many benefits of writing by hand.

In either case, I have found that when the child has some say as to which approach is taken, there is a sharp increase in engagement and compliance during our sessions. As a child, I was extremely motivated by relatedness; for me, connecting a task to a social outcome was essential for my engagement. However, some students I work with are not quite so socially motivated, and I need to address motivation and engagement from different (sometimes more creative) angles. To learn more about how to address motivation and meaningful engagement in your sessions, consider one of the evidence-based books on the topic such as the Art and Science of Motivation: A Therapist’s Guide to Working with Children, or Goal Setting and Motivation in Therapy.

Concluding thoughts

Growing up in the 1980s: all about the Cabbage Patch dolls and Care Bears.

Growing up in the 1980s: all about the Cabbage Patch dolls and Care Bears.

The world that children today are growing up in today is very different to the world I grew up in during the late 1980s, when playing “Oregon Trail” at the computer lab was the most exciting technological part of my day, and the Encyclopedia Britannica seemed to hold the entirety of the world’s knowledge. Despite the change in technology tools and access to information, many aspects of the learning process and environment have remained unchanged, such as the benefits of adults empathizing with a child’s emotions, and the need to demonstrate why a task or skill is important for a child to acquire. In reflecting on my childhood experiences, I find myself in a better position to identify and address the emotional or motivational barriers a child might be experiencing. I look forward to hearing your reflections and comments as well!

 

 

 

 

Posted in Occupational Therapy, parenting, pediatric occupational therapy, social emotional learning | Tagged , , , , , , , , , , , , , , , , , | 2 Comments

A New Way to interpret the “But You Don’t Look Sick” Response

I am happy to report that in addition to blogging here, I am now also blogging on the wonderful Creaky Joints website. Creaky Joints provides an invaluable forum for information sharing, support, and advocacy resources for persons with arthritis and related conditions.  My first blog post is A New Way to Interpret “But You Don’t Look Sick,” an excerpt of which can be found below. I look forward to more posts, which will include occupational therapy-specific strategies as well as tips for parenting while managing autoimmune-caused arthritis. If you have any ideas for future post topics, let me know in the comments section!

Can you tell who is “sick” by looking at this picture?

“When I communicate my diagnosis of rheumatoid arthritis to someone for the first time, I’m often told that I ‘don’t look sick.’ Many people understandably feel that being told they don’t look sick is delegitimizing. It is easy to interpret the statement to mean, ‘You don’t LOOK sick, so you can’t really BE sick.’ This is particularly tempting for invisible illness sufferers, as most have struggled to get appropriate diagnoses and have at some point been told that their disease was all in their head….

It is understandable that those of us with invisible illnesses feel defensive when we are told we ‘don’t look sick.’ However, sometimes the statement is really more about the speaker needing a little time to process this news, than it is a lasting statement or critique of the patient.I see the statement as more about the person learning this information going through a rapid mental process of surprise, disbelief, and acceptance, rather than them deflecting or minimizing the speaker’s reality. In that moment, I have a choice about how I can interpret their statement that I ‘don’t look sick;’ I can be defensive, or I can see that statement as a bridge to their ultimate acceptance/learning about the disease. I often say, ‘I know, I don’t feel like I look sick either, but I guess you just can’t tell from looking at someone, right?’ and then I offer to answer any questions they may have.”

Posted in autoimmune disease, Rheumatoid Arthritis | Tagged , , , , , , , | Leave a comment

The Storm After the Calm: 8 Lessons Learned After A Tumultuous Postpartum Experience With Rheumatoid Arthritis

Having a baby while managing a complex autoimmune disease: about as tiring as I look in this picture, but also as happy/sweet as Charlie looks.

Having a baby while managing a complex autoimmune disease is tiring at times (as my face shows) but also sweet and joyful (as Charlie’s face shows).

I was recently honored to be asked to share my pregnancy and postpartum journey with the popular and helpful website Autoimmune Mom. The full story can be found here. The post details my journey from a relatively tranquil pregnancy to a postpartum “storm.” It includes three sections after Charlie’s birth: 

1) Survival, Mastitis and Flare-Ups (0-3 months)

2) Feeling Like I “Almost Got This,”or Wayward Optimism (4-16 months)

3) The New Normal: Accepting that life/parenting/my health is now in a permanent state of flux (16 months to present).

Ideally, the full post should be read in order for the ultimate lessons I have learned to make sense in context.  For those who might not have time to read it all, I wanted to provide three of the 8 lessons I learned through the process of seeing a clinical psychologist (the rest of which are detailed on page 3).

Lesson 1): The therapeutic relationship has been more powerful than I anticipated. Regardless of the “outcome” of a visit (e.g., whether or not I can put into practice the things we discussed), the time we spend is meaningful and therapeutic in and of itself. I have felt validated and listened to in a way that feels different and sometimes more powerful than I have experienced elsewhere. In addition, checking in with my therapist weekly gives an emotional anchor to my week, a consistent time I can depend upon to reset and devote time to examining my life in a structured way. I really recommend therapy to anyone who might be on the fence about it.

Lesson 2): Creating a mental/physical health timeline helped me see patterns in ways I couldn’t previously.  I created a timeline of the 4 main intertwined mental and physical health issues of my life (autoimmune/RA activity, stress/anxiety events, loss of appetite, and claustrophobia/panic attacks), and color coded them (COLOR CODING FOR LIFE!). With this chart, I saw for the first time how all the aspects of my life are intertwined in ways I had never connected before (see picture below for an excerpt from years 1981-2007). I understand now that when my physical state is less than ideal, I have a much harder time coping with stressful events and any underlying anxieties. I think it would be an interesting exercise for anyone dealing with a chronic health issue.

Doc - Nov 18, 2015, 8-46 PM

Lesson 6: Accepting rather than deflecting emotions.  One of the hardest parenting adjustments for me, aside from health issues, is how quickly my emotions swing from highs to lows and back. One minute I may be dreading wrangling my squirmy 30+ pound toddler into his car seat because it hurts my hands, but then a split second later he might start singing in the sweetest voice I’ve ever heard, or doing something else that melts my heart, and I have to make sure to pause and drink in those moments, because the next minute later he might be throwing a toy car at my head.

Traveling with a baby (on a ferry, pictured here) always has ups and downs

Traveling with a baby (on a ferry, pictured here) always has ups and downs

Through the ACT approach, I have learned how to observe my thoughts rather than judging or trying to change them; previously, I would get down on myself for getting irritated or angry, whereas now I am able to accept that those feelings are part of my life, and I can observe those thoughts from a more distant stance. Paradoxically, in accepting rather than deflecting the negative aspects of my current state, I actually feel better rather than worse. Truly being present with my current state (such as feeling pain or just feeling worse than I’d like) has opened me up to feeling more at peace and even happier than when I was attempting to deflect or minimize my experiences.

I am hoping that by reading my story, others may not feel as alone in their journeys. I look forward to hearing others’ comments on the original full story or here!

 

 

 

 

 

 

 

Posted in autoimmune disease, parenting, Rheumatoid Arthritis | 2 Comments

Why and How Do Pediatric Occupational Therapists Play Games?

Pediatric occupational therapists are often asked why we spend time “just” playing games with our clients. In addition to being engaging to children, games are powerful tools through which we work on a variety of skills including fine motor, visual-motor, gross motor, strength, social, emotional, sensory, and attention, planning and other executive functioning skills.
Tic_Tac_ToeOTs are experts in adapting games to fit a child’s goals. A competent occupational therapist will never “just play” a game with a child. The game itself and many aspects of the game’s set-up will be consciously chosen and adapted on a minute by minute basis so as to support the child’s progression in a variety of areas.

To demonstrate the myriad ways even a simple game can be used to work on a multitude of important skills, I will use the example of Tic Tac Toe (or “Noughts and Crosses”) below. I will separate skills into categories for the sake of organization, but in reality we hardly ever work on skills in isolation and typically target multiple areas with one activity. There are more skills than I can list in one blog post, but I’ve covered many basic skills relevant to OT’s scope of practice that can be augmented through simple games.

Fine Motor Skills

  1. inline-graphic-11Pincer Grasp development: Use small items such as marbles for “x” and “o.” Require the child to use the pincer grasp with their thumb and pointer finger in order to pick the game items up and place them on the board. This helps them further separate the “precision” side of the hand (thumb, pointer and middle finger) from the “power” side of the hand (ring and pinky fingers). Bonus: this also works on hand arch development!
  2. Image credit from this blog post.

    Tongs: Require the child to use a proper grasp on the tongs, which helps them further isolate the “precision” side of their hand. Use fun items for the “x” and “o,” such as different colored cotton balls, beads, game pieces or marbles. Using tongs also promotes an “open web space” which is important for a mature tripod grasp for handwriting. Learn more fun ideas for using tongs in OT at the MamaOT blog here.

  3. In hand manipulation

    In-hand manipulation: Use small items such as coins for the game pieces. Require the child to start with 2-5 coins in the palm of their hand, then “walk” one coin out to their “pincer fingers” (thumb and pointer finger) while simultaneously keeping the other coins tucked into their palm with their middle, ring and pinky finger. This skills is known as “in-hand manipulation.” It is a great activity for continuing to develop the pincer grasp, in addition to improving overall hand dexterity!

  4. Stickers: Require the child to peel off stickers to use as game pieces. This works not only on individual finger dexterity but also bilateral coordination, as the child’s non-dominant hand will hold the sheet while the dominant hand peels off the sticker. Learn more about how to use stickers therapeutically here.

Visual Motor and Pre-Handwriting Skills:

  1. Scissor skills

    Scissors: Before you start the game, require the child to cut out shapes as the game pieces. Selected specific shapes at the next level up from their current level of mastery; for example, if they have mastered a square, progress them to cutting out a triangle. Hold the child accountable to grasp the scissors correctly. Using scissors works not only on fine motor skills but also on bilateral coordination as both hands must work together. Learn more about developing scissor skills here.

  2. Shape development/pre-handwriting: Instead of having a child write Xs and Os, have them draw the basic shapes they are working on mastering. Learn more about the progression of drawing shapes here.
  3. Great picture from Miss Mancy’s blog.

    Vertical Surface: Position the game board on a vertical surface (such as a wall or the underside of a table), which requires the wrist to be in a position of extension (knuckle side of the hand pulled back and facing you, if you are looking at the knuckle side of your hand). As shown in the picture on the right, wax sticks work well, or you can simply use paper and pen/pencil. Learn more about the benefits of working on a vertical surface here and here.

Handwriting:

  1. Image credit here.

    Practicing writing specific letters or words: Use “problem letters”or words instead of “X” and “Os,” and require the child to write with the desired legibility criteria. Legibility criteria can include: stroke sequence (the order in which the lines are written in order to achieve the letter), size, horizontal alignment (are the letters “sitting” on the horizontal line or “floating” or “dipping?”), and more.

  2. Pencil grips

    Pencil grasp: Change the type of writing implement used to promote a more mature writing grasp. For example, using small “stubs” of chalk can promote a tripod grasp, as can using pencils with different grips. You can also use the game as a functional activity by which you can try out different pencil grips which will promote a more efficient grasp for your child.

  3. Use a tablet (such as the iPad): There are many apps on which you can play Tic Tac Toe. To specifically work on handwriting skills, I would recommend using a stylus.
  4. Use Tic Tac Toe as a writing prompt: For older children, use a writing prompt such as, “How would you explain how to play Tic Tac Toe to someone who had never seen or heard of the game before?” Apply whatever legibility criteria you are currently using to support improvements in writing performance. This writing prompt would also help work on sequencing, or figuring out how to break an activity down into individual component parts, as well as perspective taking (particularly relevant for persons with an autism diagnosis).

Gross Motor Skills & Strengthening

  1. Toss Across – can purchase here.

    Hand eye coordination: Have the child throw a bean bag at a target in order to select which quadrant they are placing their “x” or “o.” Change how far they are standing away from the target to make the task harder or easier to facilitate the “just right challenge.” There is already a product on the market for this concept, called, “Toss Across,” or you can make your own version by following the guide here.

  2. Balance: Play the traditional paper way but stand on a BOSU ball, balance ball or other unstable surface to improve balance. As always, grade the task by providing different levels of assistance (physical or verbal cues) to help the child reach the next level up of competency from where they currently are.
  3. Awesome home made Lego Tic Tac Toe board from this blog.

    Finger/hand strength: Use resistive items for the game pieces such as different colored clothespins or even Legos on a Lego Board (see the picture on the left!).

  4. Shoulder girdle strength: Working on a vertical surface helps strengthen the shoulder girdle, especially if you work against gravity by positioning the board on a wall or on the underside of a table.

Social Skills

  1. Social rule following: Any game can be used as an opportunity to understand and follow rules. Set appropriate ground rules before game, such as, “We wait our turn, we don’t offer feedback or suggestions to others unless we are asked, we say ‘good game’ or ‘thank you afterwards.” Hold the child accountable to following those by offering gentle reminders if they are not followed.
  2. Social Skills, image credit here.

    Perspective taking: Have the child explain the rules to another child, or do an assignment where they “Explain the game of Tic Tac Toe to someone who’s never played so that they understand it.” This forces the child to consider what it’s like to not know what they know, which is a skill that generalizes into many other social contexts. This assignment works really well for games/activities that the child may really love, such as Minecraft. It can be graded up or down (made harder or easier) by the adult “scaffolding,” or giving them hints or leading questions to help them come up with the desired answers.

  3. Deciding who gets to go first: Learning to negotiate who goes first in a game is an important skill for children. Depending on the child’s level, you can model various ways to choose who goes first (for example, you can have the child whose birthday is coming up soonest go first). As they grow in their social skills, encourage them to take more responsibility/ownership of making these decisions without an adult’s help.
  4. Reading facial expressions: Use game pieces comprising different facial expressions, and discuss what those expressions represent as you play. You can integrate fine motor/handwriting skills into this version if you have the child first color and then cut out the pieces.

Emotional control and self-regulation skills

  1. Waiting one’s turn in general is a great way to work on frustration tolerance; open source image credit here.

    Apply self-regulation program language and tools: While playing the game, apply language from a self-regulation program such as the Zones of Regulation, Superflex, or the Alert Program. Apply labels to how you feel first, then show how you (the adult) use a tool to regulate your emotions. For example, you might say, “I just lost my turn, I feel frustrated and in the yellow zone.  I’m going to take 3 deep breaths to feel more calm and in the green zone.” The Superflex program has a great “unthinkable” (villain that invades your brain) called “DOF: Destroyer of Fun,” who gets into your brain and makes you overly competitive. The program helps walk children through strategies to “defeat” DOF, which I find particularly helpful! It is effective for some kids to depersonalize what is happening; saying that “DOF invaded my brain and now I have to defeat him” is less personally threatening than saying, “You’re getting too competitive, you need to figure out a way to stop now.”

  2. Frustration tolerance: Modulate whether you or the child wins, whether they are playing with preferred or non-preferred items, and other aspects to help them work towards becoming more tolerant of frustration.

Sensory Processing Skills

  1. Tic tac toe with soap or shaving cream is super fun!

    Tic tac toe with soap or shaving cream is super fun!

    Change the materials: Use X and Os with specific tactile input that challenges the child just outside their comfort zone to promote a wider sensory repertoire. For example, if they are very averse to sticky textures, require that they draw some of their Xs and Os with finger paint or shaving cream rather than pencil and paper, and increase that requirement over time. This can be done for aspects other than tactile defensiveness, but I mention a tactile example because they tend to be the easiest to visualize.

  2. Feeding issues: Use different food items for the X and O pieces. Select items according to the priorities for increasing your child’s food repertoire; learn more about how to approach feeding issues here .
  3. Change the environment: Modulate the environment (lighting, auditory distractions, visual distractions, smell distractions) either to help the child expand their tolerance of different input, or to make the child more comfortable so that you can best position them to succeed while you work on other areas. For example, if I am really trying to isolate fine motor skills and the child is very distracted by auditory and visual input, I will take them into a smaller and quieter room in our clinic so that they will be less distracted and thus better able to focus on fine motor requirements.

Executive Functioning Skills (not including emotional control, which is covered earlier); particularly relevant for an ADHD diagnosis

  1. Working in a crowded room can be a good challenge for one’s attention, but for some children it will be overly stimulating. Image credit here.

    Sustained attention: Challenge the child by playing in a difficult environment for them, such as a loud classroom. Take care to challenge them just beyond their current level of competency; this is known as the “just right challenge.” For some children, playing in the presence of 1 additional person would be very challenging, whereas others are ok with 2-3 others in the clinic but have difficulty with 4 or more. Others will find the challenge not in the number of children present but in how loud the environment is overall. You can also challenge their attention by holding them accountable to attend to whose turn it is and take their turn without a reminder. Becoming competent in sustaining attention is a vital life skill, so I try to always consider the attention demands of whatever activity I’m doing with a child, and assess whether there is a good fit between the child’s ability and the activity demands.

  2. Planning the board game can be especially motivating if food is involved! Image credit here.

    Planning/organizing: Have the child plan some or all aspects of the game’s set-up. To make this task easier, give them a set of materials/parameters to work with, such as: “We have to use one of these 4 food items as the game pieces, and a board the size of a 8×11 piece of paper or smaller.” To make the planning/organizing aspect harder, provide a more open ended structure, or introduce the presence of other executive functioning demands such as a time constraint which adds the skill of time management, or the presence of distractions which would upgrade the attention demands.

  3. Response inhibition: Hold the child accountable to inhibiting extraneous talking, touching of materials or impulsive movements (such as starting their turn before the current person has finished theirs). As with all of these modifications, fit the task to the child’s unique challenges.
  4. Working memory: Obstacle courses are a great way to work on working memory. For example, you can ask a child to perform a series of 3 different actions before taking each turn on the tic tac toe game, regardless of how it is set up. This will challenge their working memory. If 3 is easy for them, then upgrade the task to 4, and if 3 is too challenging, downgrade it to 2.

Conclusion:

A rare picture of me at work :-)

A rare picture of me at work 🙂

It’s crucially important for occupational therapy professionals to be competent in explaining to parents/teachers/caregivers why we have selected a specific game and set it up a certain way in order to work on improving foundational skills. As a lay-person, you can play a game without attending to various task demands and the game can simply be a way to pass the time. If the game is set up by a professional who is constantly manipulating various aspects to make it the “just right challenge” to help the child achieve crucial life skills, it can be a powerful tool to help a child function better and achieve their goals. My goal is always to make therapy as fun and engaging as possible for my clients, but that is never at the expense of working on foundational skills. I hope this post has helped show you how simple games can be used therapeutically by occupational therapists! Please share your additional ideas for adapting games in the comments section.

Posted in kids activities, Occupational Therapy, parenting, pediatric occupational therapy | Tagged , , , , , , , , , , | 9 Comments

My Chronic Illness Playlist

Charlie and I love to dance together - photo credit http://jessicakeenerphotography.com/

Charlie and I love to dance together – photo credit http://jessicakeenerphotography.com/

While managing my autoimmune disease rheumatoid arthritis over the last 12 years, I’ve found music to be helpful in a variety of situations. Some songs help me calm down when I’m anxious, other songs allow me to just “be” in a sad moment, and some music inspires me or puts everything in perspective. Not surprisingly, research has shown that listening to music can have many positive effects on one’s mood as well as other aspects of the mind.  Research specifically on the use of music in persons with chronic illness have found it to have beneficial effects as well.

With that in mind, I’d like to share my personal “chronic illness playlist.” I’ve divided the songs into groups based on when I have found them most helpful/appropriate, with some bonus stories/analysis regarding how I relate to them. I would love to hear your favorite songs for chronic illness or managing other difficulties in the comments!

Sad-ish songs for when you need to just feel what you’re feeling:

Although I often strive to see the positive side of difficult situations, I strongly believe there’s a value to being present to what you are feeling without attempting to push yourself into a different direction. There is mounting evidence that mindfulness training can lead to benefits in mental and physical health.  Sadness and other negative feelings are intrinsic parts of the human condition and it can be therapeutic to listen to music that makes you be present for the feelings of sadness that accompany living with a chronic illness.

1)  Why – Annie Lenox 

Choice lyrics: “This is the book I never read, these are the words I never said, this is the path I’ll never tread, these are the dreams I’ll dream instead. This is the joy that’s seldom spread, these are the tears, the tears we shed. This is the fear, this is the dread, these are the contents of my head.”

This is one of my all time favorite songs. I relate to it from the break-up perspective as well as from the chronic illness perspective. I think anyone diagnosed with a chronic illness at a young age goes through a stage where they question, “Why?” There will usually never be an answer; I did all the “right” things by exercising, eating well, etc, and while we like to think that controlling those variables will ensure good health, it’s simply not true. Bad things happen to people who do the “right” things all the time, and there just is no rhyme or reason to it. Logically knowing that, however, won’t always stop us from asking or wondering “why” this is happening.

The section I quoted above really speaks to me…I’m the kind of person who has a life to-do list that stretches miles long, and it bothers me sometimes that RA can be a limiting factor (“this is the path I’ll never tread”). That being said, I do comfort myself with the thought that even without RA, I would never be able to achieve everything I want to do in this life because I have limitless desires/interests. There are many paths I’d like to tread which I will not be able to, partly because of RA but mostly due to mortality and my limited time here on earth!

2) Two – The Antlers   

Choice lyrics: “You had a new dream, it was more like a nightmare. You were just a little kid, and they cut your hair. Then they stuck you in machines, you came so close to dying, they should have listened, they thought that you were lying.”

This song really hits home for me personally, as my path towards a diagnosis was winding and fraught with delegitimizing comments from healthcare professionals (who implied to my parents that I was covering up an eating disorder and later suggested I was “just stressed”). I am always hesitant to play “Monday morning quarterback” with my health providers, as hindsight is 20/20 and it’s not fair to say that my providers should have necessarily made the mental leap from my symptoms to my diagnosis in the early days. I understand the complexity of the system now as a provider as well. However, I will say that I was not always treated with the seriousness that my eventual diagnosis would suggest I deserved, and I will never forget the stark loneliness and fear I felt when it seemed no one wanted to help me get to the bottom of my health issues.

This song also touches on the impact of a chronic condition on loved ones. The overall tone of the song and album (see this article to learn more) is a lot sadder and reflects a much more complicated relationship than I have had with significant others, but I identify with the fact that at the end of the day, it can feel like it’s just you and the significant other facing the daily reality of living with chronic illness.

Before moving on to the next song, I just have to add/stress that the “Daddy” lyrics of this song in no way apply to me or my family. I am fortunate to have had rock solid support from my family and loved ones since my diagnosis, and in fact I might not have been diagnosed nearly as soon as I did if my parents hadn’t been so proactive.

3) Hide and Seek – Imogen Heap 

This song really captures the surreal feeling of dealing with something unexpected or disappointing in life, whether that be a break-up, health condition or other adverse circumstance.  It’s one of my go-to songs to pump up in the car while processing bad news or difficult situations.  I don’t have a ton more to say about this song, I just love it!

4) Stars – Grace Potter and the Nocturnals 

Choice lyrics: ‘All those times we looked up at the sky, looking out so far, it felt like we could fly, and now I’m all alone in the dark of night, and the moon is shining, but I can’t see the light. And I can’t look at the stars…”

This song is just perfect.  I really relate to the lyrics above as they capture the transition from feeling invincible (prior to health problems) to recognizing the fragility of life. In case anyone is interested, the backstory of this song suggests it was written about the loss of a friend, and I think many can relate to it on that level as well.

5) Out of the Woods – Taylor Swift

Taylor Swift once said that she aimed for each song on her album 1989 to capture the feeling or emotion that she describes lyrically, and I think this aim is achieved with stellar results on, “Out of the Woods.” Many people with chronic illnesses can identify with the repetitive, pulsing question: “Are we out of the woods yet?” with respect to their health. One of the hardest aspects for me to manage about rheumatoid arthritis is not knowing when I’m truly “out of the woods.” Even if my medication is working, I don’t know whether or when it will stop.  Many of the most effective biologic medications work well for a few years, and then the body’s immune system adapts to them and you have to try another one (this has happened to me once already). There is not a good video of the original version of this song, so I have linked to where you can listen to it and purchase it if desired.

Additional songs to check out that didn’t make my top 5 include: Parachute by Guster, which has a beautiful build to it (“It crept up on me, ignored all my pleas, begging to leave, no justice to name me. Fell out of the sky, cease it to be, without a reply, gravity fails me”);  Her Diamonds by Rob Thomas (of Matchbox 20 fame), which was written about his wife’s battle with an autoimmune disease; Eyes Open by Taylor Swift, which has a nice line about “everybody’s waiting…for you to break down;” and Jolene by Ray Lamontagne, which is just haunting and beautiful.

Calming songs:

The following songs have helped me feel more calm or grounded, particularly when I’ve been in an anxious state. They have been most helpful when I have recently received bad news.

1) Keep Breathing – Ingrid Michaelson  

This song is simply gorgeous. Ingrid Michaelson’s voice is beautiful, and the repetitive, hypnotic nature of the lyrics works well for reminding me that sometimes, all you can do is keep breathing.

2) Hold On – Tom Waits 

Choice lyrics: “Well your old hometown is so far away. But, inside your head there’s a record that’s playing, a song called hold on, hold on, you really got to hold on. Take my hand, I’m standing right here and just hold on.”

I just love Tom Waits’ gravelly voice. “Hold On” is also hypnotic and repetitive, which works to put me into a bit of a trace.  “Hold On” tells a pretty detailed story, but even if you don’t relate to the story, I think you can relate to the main chorus and message to “hold on.”

3) Orange Sky – Alexi Murdoch 

This song is also very hypnotic and calming to me. It reminds me that my “salvation” or the cure for my anxieties at times is love; in my case, I imagine the love I have for my family and friends, but I expect others may relate to it from a religious perspective as well.

4) Hoppipolla  -Sigur Ros

Hoppipolla is Icelandic for, “jumping into puddles,” and on some level I just love that imagery. I really respond to the overall tone of this song, and it has personal relevance to me as I walked down to aisle to it at my wedding in 2012.

5) Teardrop -Massive Attack  

Choice lyric: “Love, love is a verb, Love is a doing word, Fearless on my breath…”

“Fearless on my breath” is a beautiful sentiment; I love the image of being fearless in the face of adversity. Of course, I have a positive association with this song as it is the theme for the TV show “House,” which depicts many complicated medical conditions which people with chronic illness can relate to (although many of the cases are more acute than chronic). There’s a nice repeating theme of, “Is it lupus?” throughout the show, which brings light/awareness to the fact that autoimmune disease are notoriously hard to diagnose (in other words, it always  could be lupus).

6)  Dreaming my Dreams – The Cranberries  

There is just something about this entire Cranberries album that is very relaxing and calming to me, although I will admit that many of the songs have a bit of a somber tone. This one is perhaps the most optimistic and calming to me.

Inspirational Songs:

The following are songs that help me focus on the positive, either through lyrics, overall musical tone or both.

1) With Every Heartbeat – Robyn with Kleerup 

Choice lyrics: “Still I’m dying with every step I take, but I don’t look back. And it hurts with every heartbeat…”

There’s something hypnotic about the way Robyn sings, “And it hurts with every heartbeat,” especially from minute 2:40 through to the end. I think this song provides a beautiful mantra for people with chronic pain or illness. Yes, she emphasizes that it hurts with every heartbeat, but I’m still classifying this as inspirational because of the emphasis on not looking back, and the overall uplifting tone of the song.

2) The Remedy – Jason Mraz 

Choice lyrics: “I won’t worry my life away…You can turn off the sun but I’m still gonna shine and I’ll tell you why, Because the remedy is the experience…”

This song was allegedly written about Jason Mraz’s friend’s battle with cancer, and it has some explicit references to battling illness (such as “we will cure this dirty old disease, ’cause if you got the poison I got the remedy”). This song definitely inspires me to not “worry my life away,” and focus on the real experiences possible to me at any moment.

3)  Another Day – RENT Original Soundtrack 

Choice lyrics: “There’s only us, there’s only this. Forget regret, or life is yours to miss. No other road, no other way…no day but today.

This is definitely one of my personal anthems. Similar to “The Remedy,” it inspires me to focus on the moment and not get wrapped up in worrying about the future. The musical “Rent” has a lot of positive messages in it, for those who are interested!

4)  Feel again – One Republic   

This song simply pumps me up, and I love the sentiment of, “I was a lonely soul but that’s the old me.” It obviously relates more directly to a romantic situation than chronic illness, but I like thinking about being in a better place than the “old me,” moving forward in a positive direction.

5) Man in the Mirror – Michael Jackson 

Choice lyric: “If you want to make the world a better place, take a look at yourself, and then make a change.”

Yes, this song is corny, but it has such a profound message about starting with oneself if one wants to see a better world. Having a chronic illness can easily make one feel a lack of agency, yet we always have the freedom to choose at least our attitude and our actions towards others. This song also reminds me that whatever I am suffering in the moment, I can still make the world a better place for others who might be suffering in different ways.

Songs that just make you happy:

The songs in this category are the most subjective and personal, so likely these won’t be as relatable to others as the songs listed above. Still, I think it’s important to point out the therapeutic value of that stock of songs that just makes us happy for some reason! That reason could be a nostalgic happy memory, the overall tone of the song, the lyrics, or a combination of the above. I suggest creating a playlist called “happy mix” for when you need to either sustain a happy mental state or inspire yourself to get into one, whether the reason is related to chronic illness or not! Here are just a few on my happy list:

1) King of Wishful Thinking – Go West   

I was one of the first of my friends to get my driver’s license, and I have many fond memories of blasting this song on trips to the mall in the late 90s.

2) Now You Has Jazz – Louis Armstrong and the All stars live at the Newport Jazz Festival

As this is my personal “happy list,” of course I cannot leave out any jazz music! I have spent many happy evenings on the dance floor moving and shaking to infectious swing music. Something about Louis Armstrong’s voice just makes me happy. This particular video includes footage of some current swing dancers as well, for bonus happy points!

3) My Girl – The Temptations 

You really can’t go wrong with Motown or Soul music. This song always brings a smile to my face!

Conclusion

I remember reading The Songlines in college, where Bruce Chatwin casually mentions that humans might have spoken our first words as songs, to the rhythm of our own walking. That always stuck in my mind as a beautiful image, and now that I have a child, I have witnessed how primal the human reaction to music is. I was absolutely shocked when my 11 month old started bouncing, smiling and shaking to music for the first time, completely unprovoked by my husband or myself.  Music clearly has a deep effect on our mood states, and I urge all with chronic illness to consider using music’s effects to support their needs. To learn more, check out the American Music Therapy Association.

Posted in Rheumatoid Arthritis | Tagged , , , , , , , , | 1 Comment