Spring is typically a time of bumpy transition for me in going from the cold and wet to new growth (and lots of pollen, oy!). I often feel like a plant, coming out of dormancy and agitating for the light so that I may reach my full growth potential before my leaves fall off again…sound familiar?
Needless to say, after an extremely rainy winter and early spring, I am relishing the sunshine and beautiful weather here!
A few updates:
After deciding to take winter quarter off from school, I reached a huge milestone in April – I completed a [super rough] draft of my book about pain as a social justice issue!
Below is “Blogging for Change”, a paper I wrote for school about my blog and the impact that web-based forums are having for people with chronic pain and illness conditions. It ended up being very interesting and inspiring to write.
My parting words: Take heart! Every day I read reports on developments that have the potential to help people with chronic pain and illness and, while the world feels ever tenuous, I am encouraged by progress that is being made bit by bit. I thank all of you for being a part of it.
P.S. Don’t ever hesitate to reach out if you have comments, questions or to say “hi.” It’s great to hear from you.
Blogging for Change
In 2016 I established my Pain Activism & Education blog, http://www.maayansimon.wordpress.com, with the purpose of making information about chronic pain accessible and relatable. I have had chronic pain since 2004 but, despite amassing numerous diagnoses by multiple doctors (including chronic fatigue syndrome, fibromyalgia and hypermobile Ehlers-Danlos syndrome, which I was eventually accurately diagnosed with), I was never counseled or educated about what it means to have and cope with “pain syndrome.” Over the last 15 years living with and studying chronic pain, I have learned a tremendous amount that I wish to share. Through my Pain Activism & Education website I am creating tools and resources to advance the empowerment of people in pain by shifting prejudiced treatment and marginalization of people with chronic pain conditions.
A blog, short for “web log,” is a webpage or site that can be used for a variety of purposes, from personal to commercial, which, according to dictionary.com, emerged in the mid-1990s. As dictionary.com also describes, what typically distinguishes a blog from other media is that it is written in first person, is conversational in style and emphasizes the person’s experiences and opinions. There are often sections for comments from readers to voice their reflections, as well.
As a “millennial” I grew up reading and commenting on blogs as well as creating my own, primarily on wordpress.com. I had a custom WordPress site designed for my previous strategy consulting business. My comfort with this platform, and the availability of a free option, made it a natural choice for my Pain Activism & Education blog. To create my blog, I selected a free template and customized it with my logo, menu options and content displays.
My motivation to start a blog came from my desire to share my perspectives about the information that I was learning about pain. I was not finding sites that bridge the specific topic of pain with a social justice perspective. Additionally, I wanted to address pain from a multidimensional point of view that includes anatomical, emotional, social and spiritual pain, which are typically segregated. The goals that I established for my blog include:
An outlet for self-expression about my pain experiences
A venue to use my learning to educate others through my research and original articles
A platform for promoting change in how people in pain are treated
Strategically, I sought to create a “home base” for my Pain Activism & Education web identity. In 2013 I took an online course called Write Your Book to Grow Your Biz and learned that whether the author has an established audience to market to is considered heavily by publishers. I already had the seeds of a book in mind and, as I progressed in developing my book (that I am still working on), it became apparent that it was a prime time to create a web identity, which is comprised of the blog and my Facebook group page, http://www.facebook.com/PainActivism. At present, I have approximately 400 subscribers combined. I generally post every few months. Many of my posts are updates about my life, reflective writing, and progress updates about my Pain Activism & Education activities.
I also turned 30 years old in 2016, which was a momentous milestone in my life as a person with chronic pain disease. My own struggle to accept my pain disabilities was a long and complex journey, which greatly informs the intent of my blog to make information accessible and relatable. As I wrote in my very first blog piece,
For many years I did not know if I would, or whether I even wanted to, make it to see my 30th birthday. Turning 30 has long felt like a place in the emotional time – space continuum that is not entirely real, and so there is an element of disbelief that I am here. Since my late teens, pain and illness have been forces in my life that I never saw coming. Existing in this body and negotiating this rich and tumultuous relationship has been an education like no other, at once devastating my sense of self and illuminating my sense of purpose.
Contending with pain, grief, fear and shame on such deep, continual levels has changed how I live my life. Mourning my capacities and abilities and the losses is a complex and protracted kind of grief. My experiences with pain, depression, suicidality, and trauma are what have shown me how important it is to talk about my physical and mental health disabilities, and to do that difficult (and radical!) work of choosing to see others’ pain. I also want to acknowledge the significant transition I have been making, in moving away from my grassroots strategy and development work, that has been a central part of my life for over 15 years, and committing myself to my pain activism and education work, and the writing of my book, which is about changing how we think about pain/pain as a social justice issue. (“Writings”)
Creating my blog marked a public and external manifestation of the years of private, internal work and my claim of pride of my identity as a Pain Activist and Educator.
It is through my own evolution on my illness and disability path that led me to want to dedicate my limited physical and emotional resources to developing my blog. Being that I am not easily able to attend many events, much of my own access to and engagement with disability community has been through virtual communication, both as an active participant and anonymous reader. Online forums, such as a yahoo message board for people with chronic pelvic pain called “Happy Pelvis,” have made a great impact on my own growth from feeling hopeless and powerless to finding my voice. Another example is web content from disability organizers like the performance project Sins Invalid, which validated my experiences of being marginalized and helped me confront my shame about being “permanently disabled” by reframing disability as a social problem and not a personal failing.
Although blogging adds to my already limited workload capacity, the benefit and increased meaning in my life is well worth it. Unsurprisingly, in “Communication and Cybercoping: Coping With Chronic Illness Through Communicative Action in Online Support Networks” the authors Jeong-Nam Kim and Seungyoon Lee show that “information seeking” and “information forwarding,” as is done in writing a blog, increase emotional and problem solving coping skills (779). Additionally, the authors of “Communicating the Experience of Chronic Pain and Illness Through Blogging,” Pamela Katz Ressler, RN, MS, HN-BC, et al., found that “initiating and maintaining an illness blog resulted in increased connection with others, decreased isolation, and provided an opportunity to tell their illness story,” which I can relate to in my own experience of blogging (2). The public nature of blogging adds a crucial element of making meaning and sense out of living with chronic pain and illness by bringing my pain experiences out of obstruction, isolation and secrecy. The practice of articulating my experiences for others helps me to better understand and cope with them.
Like me, online interaction is crucial to quality of life for many people with chronic illnesses. As Frances Ryan discusses in The Guardian article “The missing link: why disabled people can’t afford to #DeleteFacebook,” online disability blogs and forums are popular because they serve a critical need for people with disabilities, many of whom are isolated, to connect and share information. Many of Ryan’s points about the necessity of social media in generating opportunities for people with disabilities to exchange support and virtually organize for change, are motivating factors for my own blog. As Ryan shares,“[social media] can also give a sense of power and opportunity to those who might otherwise lack it” (par. 10). From my own experience, I know that without accurate information and support for people in pain, quality of life and even the desire to stay alive, can diminish rapidly.
The internet provides many advantages for people with chronic pain and illnesses, such as opportunities for participation to varying degrees depending on the venue and an individual’s level of involvement in replying to other users, posting comments on content, and so on. As Karin L. Becker, MA, writes in “Cyberhugs: Creating a Voice for Chronic Pain Sufferers Through Technology,” “As a marginalized group who is discouraged from voicing their pain, chronic pain sufferers are stripped of a voice. … The creation of the safe space [of an online community] can help cultivate a voice, both in terms of working through the complexity of articulating phenomena that exist outside of language as well as discussing experiences that exist outside of mainstream society” (123–124). Becker identifies validation and encouragement as central functions of online chronic pain communities, additionally emphasizing the rarity and need for being able to express oneself authentically without the judgments or positive spin that can come from sharing with medical professionals or friends and family (125–126).
In the articles I reviewed, online communities can include social media such as Facebook, Twitter, Instagram and Tumblr; interactive message boards, which range from being independent of any organization and unmoderated to being invitation-only from a health organization and professionally moderated; and blogs, that are sometimes considered “social media” and sometimes separately categorized. According to “E-Patients With a Disability or Chronic Disease” in which Susannah Fox summarizes a 2007 Pew Research Center poll, even though people with chronic illnesses are approximately 25% less likely to use the Internet than the general population, those that do are highly engaged online “health consumers” (par. 1). Of particular significance is that 57% of those with chronic conditions report that “the information [that they accessed online] changed the way they cope with a chronic condition or manage pain, compared with 36% of other[s]” (par. 5). Additionally, in “Illness on the Internet: From Private to Public Experience” Peter Conrad, et al. cite findings that “one in four Internet users living with a chronic condition report of going online to find others with similar health conditions,” also emphasizing research findings that “there are far more individuals silently participating in the various sites than are visible on screen” (24).
Interestingly, as is the case with my blog and Facebook page, it appears that, while anonymity may be an incentive for some, many people like me are creating a radically different discourse around disability and pain through making our voices public. As Becker describes, having access to other people‘s stories that reflect my own instills invaluable confidence in my self-knowledge that then carries into being able to better advocate for others and myself. In the article by Ressler et al. the authors point out that it is common for online communities to create a ripple effect in which increased self agency leads to social action, as is the case in my own experience of starting a blog to generate discourse and movement-building about pain as a social justice issue (6).
Through analyzing the institutional, interpersonal and internalized oppression of people in pain, I strive to use my Pain Activism & Education blog to broaden not only what pain is thought of as, but also how pain is thought about. For example, in September 2017, National Pain Awareness Month, I published a six-part series, “Claiming Multidimensionality of Pain,” excerpted below:
Perception of pain cannot be isolated to a single factor, which underlies a fundamental paradox of pain: certainty of perceiving pain is often at odds with understanding what exactly one is perceiving (Thernstrom 15, 281). One may know the experience of being in pain innately, but to piece apart the intricacies it is difficult to go further than superficial terms such as “it hurts when I bend this way,” or “I feel stressed or anxious when I think about x.” So, then, what is it to perceive pain?
Consider, for a moment: how do you know you are not in pain? If you are experiencing pain, relate this question to part of yourself that is not currently in pain. What is it within you or about you that is indicating and providing feedback that pain is not present or anticipated? Is it a sense you have in your body? A feeling? An awareness in your mind? In other words, what is absent in the experience of not being in pain?
As you will notice, the absence of pain and, conversely, the presence of pain, cannot be pinpointed to a singular factor. Indeed, to experience pain multiple factors inclusive of mind and body must be in play. Melanie Thernstrom, author of The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering, describes the perception of pain as “…the elusive intersection of three overlapping circles—cognition, sensation, and emotion,” (284). To put it another way, perception of pain encompasses what we think (cognition), brain-nervous system inputs (sensation), and what we feel (emotion) (Butler and Moseley 18-21).
No singular factor of pain operates unilaterally and neither can pain be cordoned off as an experience of either body or mind regardless of “type” of pain, anatomical, emotional or other (Thernstrom 281). For example, if you think of an experience of emotional pain you will notice that your internal understanding of this experience encompasses sensation in the body such as a feeling in the pit of your stomach or a heaviness or tension in your chest, and what you “feel” and “think” about your experience, too (Butler and Moseley 19). This is because we are not a body or a mind; it is not an either/or proposition. (“Claiming Multidimensionality of Pain: Part I”)
My blog is often a starting point for ideas or concepts that I am exploring and I find that the interactive nature, in which people can leave feedback or pose questions in the comments section, helps me deepen my perspectives and approaches. One example is that the “Claiming Multidimensionality of Pain” blog series ended up serving as the foundation for an Independent Learning Pursuit paper. This dynamic and participatory quality of blogging reflects my approach of active engagement rather than a top down “expert” model. I also strive to provide applicable tools for people to use and share, such as the C.A.R.E. tool developed for sensitively responding to people in pain:
C – Compassionately acknowledge: reflect back that you “get” they are in pain e.g. “That must be really hard”
A – Affirm: show empathy and understanding e.g. “It is reasonable you are experiencing this fear”
R – Reassure: validate the person’s experience e.g. “I can tell you are really struggling” or “Those feelings are legitimate” or simply “I believe you”
E – Establish support/next steps: this can be a hug (ask first), simply making eye contact and/or listening, telling someone you will keep good thoughts for them, asking the person if they want a check in call later on, or even additional support such as help in creating an action plan. (“How to Respond to a Person in Pain: C.A.R.E.”)
Many of the comments I receive are also hugely validating and keep me motivated. For instance, in response to the “Claiming Multidimensionality of Pain” series one reader wrote, “As a person with the word ‘pain’ in my diagnosis, ‘Chronic Regional Pain Syndrome,’ I have been challenged over many years as to how to adapt socially and emotionally considering the pain I am in. This is a welcome blog and I thank you for it” (“Claiming Multidimensionality of Pain”). I started writing to affect other people’s experiences and show them that they are not alone and, as Ressler et al. and Kim and Lee found, in the process, I feel encouraged and supported.
Through my blog I am not only sharing my experiences but also adding to a combined effort with countless other chronic pain and illness bloggers to create discourse and information that is greater than the sum of its parts. A central barrier to pain conditions being taken seriously is that, as Becker writes, paraphrasing Elaine Scarry’s The Body in Pain: The Making and Unmaking of the World, “if pain is not expressed, it has no reality. Pain plays a paradoxical role of being something that cannot be denied, but also that which cannot be confirmed” due to it’s subjective nature that relies on self-reporting, which is often doubted (123). The advent of the Internet and the surge of people from around the world sharing similar experiences is slowly but surely making it much more difficult for others to deny the reports of people with chronic pain conditions.
In “‘Keep complaining til someone listens’: Exchanges of tacit healthcare knowledge in online illness communities,” Drew Foster demonstrates how the Internet “challenges long-standing hierarchical models of information giving in medicine,” referencing researchers K.K. Barker and T.R. Galardi who “show how this potent combination of lived, embodied illness experience and connecting with others with a similar experience enhances patients’ ability to challenge medical expertise” (26-27). By sharing first-hand accounts of pain in online venues, people with pain and chronic illnesses are collectively creating a paradigm shift that challenges the power of outside arbiters to define or legitimize pain experiences.
In line with Foster’s interest in the value of tacit knowledge that emerges through patient interactions on the Internet, in “Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness: A Qualitative Systematic Review“ Natasja Kingod et al. also highlight the impact of online communities in helping patients develop and identify their expertise that “was not something that could be generated by health care professionals because it arose from real life experiences and situations” to claim their power (94). Many of the examples given are about patients helping one another “translate” their experiences, whether medical information or their own assessment of symptoms, in order to reach greater empowerment and self-determination (95).
What strikes me is how the Internet tangibly changes what it means to experience support and community for a chronic condition, thus changing the lived experience of having a chronic condition. As Conrad et al. explain, the Internet has made way for “illness subcultures” through facilitating public expressions of illness that were not previously evident (27). Similarly, Kingod et al. identify four themes from 13 articles in the study, including “illness–associated identity work, social support and connectivity, experiential knowledge sharing, and collective voice and mobilization” (92). The authors note that, of the studies examined, conclusions on the extent of benefit differ in being seen as positive to inconsequential (90–91).
Even so, Kingod et al. conclude that there are significant benefits of “online communities to rebuild a social network lost due to feelings of isolation and loneliness,” which I can relate to in my own use of online illness communities and as an impetus for starting my blog (94). Among the “advantages of online peer-to-peer support” that Kingod et al. find are: “instant information exchange, easy access, the self-paced nature of interaction, and lack of restrictions regarding time and location” (90). Additionally, the power of sharing stories is found to simultaneously help the person doing the sharing and the others involved. For instance, the authors write, “Across illness groups in online environments, the sharing of autobiographical stories seemed to help them through processes of self-realization, providing a kind of emotional relief and enabling identity work” (95).
The article “The thing about pain: The remaking of illness narratives in chronic pain expressions on social media” by Elena Gonzalez-Polledo and Jen Tarr examines visual representations of pain as expressed by shared images on social media sites Tumblr and Flickr and how these sites are creating new “illness narratives” when images are examined collectively through a narrative medicine lens (1457-1458). The authors assert that, “Social media are therefore part of the act of configuring pain expression, as much as the users themselves are” (1467). This observation echoes Conrad et al.’s findings that online communication is transforming the landscape of illness as a collective experience, or as Kingod et al. put it, “The collaborative identity work in the form of sharing of feelings and experiences is an online phenomenon” (95). Additionally, Kingod et al. emphasize that through the expertise, empowerment and solidarity that emerges in virtual settings, many online communities take on social action efforts that “are increasingly used to challenge the paradigms of biomedical knowledge,” which underscores the value my blog as one of the many resources in the public domain contributing to the whole of people with chronic conditions reclaiming and influencing broader perceptions and advocating for change (96).
In the future I would like to cross promote with other bloggers and pain and disability organizations, such as guest blogging or being part of a pool of bloggers coordinating around a specific theme. I would also like to expand my writing to other publications in order to build my portfolio and drive traffic to my blog. For instance, I am listed on Disabled Writers, a database to connect disabled writers with publications and as sources for journalists (my profile: http://www.disabledwriters.com/profiles/maayan-simon). I plan to optimize my blog for disability accessibility and integrate my blog with a more expansive professional website. After researching this paper, I also want to create more participatory opportunities to encourage the audience to be more active in their contributions.
I am proud to be a part of the powerful online disability and pain activism communities. It is heartening to know that I am both joining and joined by others to progress advocacy and awareness. As technology continues to develop I look forward to being an active participant and voice for Pain Activism & Education on the Internet.
Becker, Karin L. “Cyberhugs: Creating a Voice for Chronic Pain Sufferers Through Technology.” Cyberpsychology, Behavior, and Social Networking. vol. 16, no. 2, 2013, pp. 123-126. doi: 10.1089/cyber.2012.0361.
Conrad, Peter et al. “Illness and the Internet: From Private to Public Experience.” Health. vol. 20, 2016, pp. 22-32. Sage Publications, doi: 10.1177/1363459315611941hea.sagepub.com.
Gonzalez-Polledo, Elena and Jen Tarr. “The Thing About Pain: The Remaking of Illness Narratives in Chronic Pain Expression on Social Media.” New Media & Society. vol. 18, 2016, pp. 1455-1472. Sage Publications, doi: 10.1177/1461444814560126nms.sagepub.com.
Kim, Jeong-Nam and Seungyoon Lee. “Communication and Cybercoping: Coping With Chronic Illness Through Communicative Action in Online Support Networks.” Journal of Health Communication. no. 19, 2014, pp. 775-794. Taylor & Francis Group, LLC, doi: 10.1080/ 10810730.2013.864724.
Kingod, Natasja et al. “Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness: A Qualitative Systematic Review.” Qualitative Health Research. vol. 27, 2017, pp. 89-99. Sage Publications, doi: 10.1177/1049732316680203qhr.sagepub.com.
Ressler, Pamela Katz. “Communicating the Experience of Chronic Pain Through Blogging.” Journal of Medical Internet Research. vol. 14, 23 Oct. 2012, pp. 1-23. doi: 10.2196/jmir.2002.
My grassroots goal for 2019 is $2,333 and, however you choose to contribute, your gift will be tremendously appreciated. As you probably know, I’m excellent at stretching a small budget and my commitment to you is to make the most of every cent you give.
I know that I’ve said it before, but I want to thank you again for all of your support in getting me this far, regardless of whether you are able to contribute financially. I have been hard at work writing grants but funding is limited and your grassroots solidarity helps tremendously. I have a lot planned for this year to continue maximizing my impact and having you to share the fruits of my labor with always makes my work so much more meaningful. I’m truly blessed to have you in my life.
Please forward this email to friends and colleagues you think will be interested.
Thanks for your consideration and for all of the ways you have already helped, even if you don’t know it. I’m enthusiastic to share my next trip around the sun with you!
P.S. Thanks again for taking the time to share your love and support with me!
Special thanks to all of you who have made 2018 especially sweet.
Here are some photos of a few particularly awesome friends who are all addressing pain by making the world more comfortable, understanding and creative. Check out their links for guaranteed amazingness!
L: Ma’ayan wearing sunglasses & smiling; R: Andy in sunglasses and baseball cap. Water in background. M has redhair and fair skin. A has brown skin and goatee.
L: Ma’ayan wearing sunglasses & smiling; R: Andy in sunglasses and baseball cap. Water in background. M has redhair and fair skin. A has brown skin and goatee.
L: Ma’ayan has fair skin and wearing in red western plaid shirt and purple jacket; R: Star in baseball cap and has light brown skin.
L: Llano has light brown skin and is wearing ascot. Ma’ayan wearing striped scarf. Star has light brown skin and is wearing bowler hat and grey sweater w/red hearts.
L: Freddie has fair skin, lip ring and is wearing widebrim black hat; R: Ma’ayan has fair skin, smiling and in pink raincoat w/hood over head. Rainbow in backfround!
L: Buffy tan head/muzzle w/brown nose; Ma’ayan has fair skin, pursing lips, and fluffy redhair sticking up
I have an extremely special announcement of a new addition to my family: my service dog Buffy Baruch Simon!
I have been awaiting a service dog through Canine Companions for Independence (CCI) since 2016 and, in late October, I was invited to team training to make my dream a reality. After a two week residential training at CCI headquarters in Santa Rosa, Buffy and I graduated on November 9, 2018 and we are a fully credentialed service dog team.
The time has finally arrived: I will be starting production of the Unshame Pain Video Project at the end of June!
Please circulate the questionnaire below (or click here: https://goo.gl/forms/dnX5NwoJySlFInYr1) far and wide to help us get together a great list of interviewees—and if you are interested in being interviewed or supporting in another way, definitely fill out and submit the form yourself.
Contributions and/or suggestions for filming locations in the East Bay, volunteering skills or services, moral support/encouragement and financial gifts (paypal.me/MaayanSimon) welcomed and valued!
Thank you so much for all of your love and spirit. It’s always great to hear from you so please say “hi” or get in touch with suggestions anytime you think of it.
It’s so exciting to be realizing this vision and I truly could not have gotten to this point without you. THANK YOU!!