At my most recent doctor’s appointment, something just seemed off. I was struggling through a bad cold and not thinking clearly, so it didn’t occur to me to ask more questions in the moment. But after I left the office, I found myself thinking, why didn’t he ask me about any of my conditions or symptoms? Why did he ask about specific symptoms I have no history of? When I asked why I needed to come back in six months for another visit, why did he say that he likes to see patients with conditions like depression or headaches more often? (I have no history of either.)
As you can probably imagine, I was frustrated to see such glaring mistakes and inaccuracies in my chart. What if I wind up in the ER, unable to communicate my medical history to the attending physician? God forbid they treat me according to the (mis)information in my chart and potentially cause serious harm. It may sound unlikely, but this happens more than you’d expect. Luckily, the Health Insurance Portability and Accountability Act (HIPAA) gives you the right to correct errors in your medical record. While the process for doing so varies from one provider to another, your physician must allow you to request an amendment to your record. They can accept or deny your request, but they must include a record of your request in your file even if it’s denied. For more information about this process and tips for reviewing your records, click here. While this experience has been an unwanted hassle, I’m even more convinced that my research on health literacy (as part of my master’s thesis) is needed now more than ever. Doctors are humans, and we all make mistakes. But by empowering those with chronic illnesses and/or disabilities to hold physicians accountable, maybe we can prevent medical mistakes from harming more patients in the future. Have you had a similar experience? I would love to hear your story. Tell me in the comments or contact me here.
0 Comments
The following essay is a recent assignment for a class I'm currently taking, the Interface of Art and Disease, at the University of Findlay. As more and more Americans receive their COVID-19 vaccinations, the highly publicized debate about the innovative drug’s efficacy continues. While the vaccine was rolled out to the public in record time, its development is based on decades of previous research on similar viral infections and messenger RNA (mRNA). As Krisberg highlights in her article for The Nation’s Health, the challenge of developing an effective vaccine is only the first step in the process of winning the battle against COVID-19. The next – and as some would argue, most important – step in the process is actually getting people vaccinated (6). This may be the biggest challenge yet. Educating the public, and particularly those who are at increased risk of contracting COVID-19, on the benefits and risks of receiving the vaccine is the current priority of health communication professionals. An understanding of the political climate in the United States and other social factors certainly influence the strategies that are used to persuade individuals to roll up their sleeves. But a deeper analysis of the historical underpinnings that surround vaccines in general, and the social implications involved, is necessary to fully grasp the public’s response to the current crisis. By viewing the vaccination dilemma through a health communication lens and using the development of the canine distemper vaccine and the human papillomavirus (HPV) vaccine as examples, I hope to shed light on this pressing public health issue.
The growing popularity of hunting and pet ownership in late nineteenth and early twentieth century Britain led researchers to begin their investigation into the cause of canine distemper. Early studies sought to isolate and identify the agent responsible for the disease, eventually leading to the development of several experimental vaccines with varying levels of effectiveness. This complex process spurred advances in both animal and human medicine, including the use of ferrets in research (which would prove integral to research on human influenza), new protocols for vaccination and the two-stage vaccine method of immunization (2). Along with new scientific knowledge, distemper research contributed to the development of creative advocacy and funding campaigns that would continue to influence health communication in the coming century. In 1923, the editor of England’s popular magazine The Field established the Field Distemper Fund, allowing the public to participate in an initiative that brought together veterinarians, medical researchers, breeders and various professional associations in the pursuit of a common goal. Advertisements appearing in the magazine encouraged individuals and organizations to contribute to the fund. As a result, over 3,500 donors from around the world became stakeholders in the project. As Bresalier and Worboys point out, “not only did individuals send in donations, but they also followed the progress of the research in popular publications, corresponded with NIMR and WPRL researchers, volunteered pets for trials, and, after 1931, were willing to pay to have their dogs immunized by one of the two methods available” (2). The development of the distemper vaccine highlights a significant shift in public engagement with medical research and the role of communication and health promotion in science and medicine.
Misinformation about the prevalence of HPV and the fear that the vaccine will promote adolescent promiscuity have made some parents hesitant to have their children vaccinated. While the vaccine has been approved for both males and females, the benefits of vaccination are certainly greater for females. This fact, along with the knowledge that HPV can also be prevented through abstinence, has led to a wide range of responses from both adolescents and parents. Engels emphasizes this disparity, citing “a significant gap between parents who are in favor of mandatory TDAP (tetanus, diphtheria, and pertussis) vaccine and those in favor of mandatory HPV vaccine… suggesting that many hold the view that HPV can be avoided through methods other than vaccination” (3). She describes making the vaccine mandatory as a new form of biopower and a strategy of normalization, resulting in a shift in attitudes, behaviors and norms. As health communication professionals work to dispel the myths surrounding the HPV vaccine, they’ve begun to incorporate creative methods of engaging parents and adolescents. For example, researchers at The Ohio State University developed and tested a comic book designed to entertain young people while educating them about the dangers of HPV and the benefits of vaccination (5). While the COVID-19 vaccine and the regulations surrounding it continue to spark controversy in the United States, health communication professionals are tasked with the difficult challenge of not only finding effective ways to share important information, but also influencing individual health behavior on a large scale. In addition to traditional print publications like those used in the fight against canine distemper and even the more recent campaign for HPV vaccination, new tools and technology like social media present new challenges and opportunities to reach the public. The strategic use of these tools could determine the outcome of the current pandemic and pave the way for future advocates in the realm of health literacy. Sources1. Alt, Kimberly | Reviewed By: JoAnna Pendergrass - DVM, K. (2021, March 16). Which dog vaccinations are necessary? Retrieved March 28, 2021, from https://www.caninejournal.com/dog-vaccinations/#distemper
2. Bresalier, M., & Worboys, M. (2013, July 5). 'Saving the lives of our dogs': The development of canine distemper vaccine in interwar Britain. Retrieved March 25, 2021, from https://pubmed.ncbi.nlm.nih.gov/24941736/ 3. Engels, K. S. (2015, October 6). Biopower, normalization, and HPV: A Foucauldian analysis of the HPV vaccine controversy. Retrieved March 25, 2021, from https://pubmed.ncbi.nlm.nih.gov/26438668/ 4. Grimes, J. (2006, November 03). HPV vaccine development: A case study of prevention and politics. Retrieved March 25, 2021, from https://iubmb.onlinelibrary.wiley.com/doi/full/10.1002/bmb.2006.49403402148 5. Katz, M. L., Oldach, B. R., Goodwin, J., Reiter, P. L., Ruffin, M. T., IV, & Paskett, E. D. (2014, January 15). Development and initial feedback about a human papillomavirus (HPV) vaccine comic book for adolescents. Retrieved March 25, 2021, from https://pubmed.ncbi.nlm.nih.gov/24420004/ 6. Krisberg, K. (2021, February). Public health messaging vital for COVID-19 vaccine uptake. Nation’s Health, 1–6. Christmas is almost here, and if you’re anything like the rest of us, you probably have a few gifts left to wrap. Fortunately, I’ve discovered a few handy hacks that make wrapping quick, easy and painless. Plus, they’ll have everyone on your list admiring your crafty, eco-friendly handiwork!
Adulting with Chronic Illness 101: Celebrating National Disability Employment Awareness Month10/15/2020
This month marks the 75th anniversary of National Disability Employment Awareness Month. In August the Americans with Disabilities Act, which played a major role in giving people with disabilities access to schools and workplaces, celebrated its 30th anniversary. These milestones, combined with the challenges we’ve faced as COVID threatens many of our businesses and livelihoods, have thrust disability employment into the spotlight.
I’ll admit it; I used to think that asking for accommodations to perform my job somehow made me less valuable as an employee and as a human. Of course this isn’t true. And I’ve learned that while some see the needs of people with disabilities as an inconvenience for employers, the resilience, adaptability and determination of those with disabilities often far outweigh the negatives. Fortunately, more and more companies are beginning to realize this and are making strides toward a more inclusive environment.
As a graduate assistant in my university’s Center for Career & Professional Development, I’ve become even more aware of the need for inclusion and immunodiversity in the workplace. To help all students and alumni succeed in their job searches and professional development, we have to remember those with disabilities and/or chronic illness. Luckily, there are more and more resources popping up every day for the growing population of job hunters with disabilities. My current favorite is Chronically Capable, a job search platform created by Hannah Olson, a Lyme survivor who was forced to leave her dream job because of intense IV treatments.
Chronically Capable isn’t just a great resource for people seeking more accessible careers; it’s an opportunity for companies to connect with largely overlooked talent. According to their website, companies that employ people with disabilities have 90% higher retention rates and a 72% increase in employee productivity. And it’s no wonder: employers that have partnered with Chronically Capable provide their teams with the tools they need to succeed. Each employer’s profile includes a breakdown of the workplace accommodations they provide, like flexible work and leave schedules, sign language interpreters, accessible restrooms and fragrance-free workplaces. Many companies also offer the option to work remotely.
Another easily-accessible resource for job hunters is abilityjobfair.org. This site provides live online career fairs with a variety of companies on a regular basis. Job seekers can video chat live with employers on this talk/text/ASL-friendly platform. Abilityjobs.com also offers a job board with thousands of postings by companies seeking people with disabilities.
If you have questions about the ADA, disability employment or accommodations, the Employer Assistance and Resource Network on Disability Inclusion (EARN) and the Job Accommodation Network (JAN) are great places to start. JAN even offers an A to Z list of accommodations that you can search by disability, accommodation or work-related function. If you’re not sure how to talk to your supervisor or HR department about accommodations, you can learn how other people with similar limitations have adapted their jobs to fit their needs. These are just a few of the resources available to job seekers with disabilities. Many colleges and universities also have career and professional development offices or disability and inclusion departments that may be able to help students and alumni in the job search. As more companies realize the benefits of hiring a diverse team and the feasibility of working remotely, more doors may open for people with disabilities. It’s time we start recognizing and appreciating the unique contributions people with disabilities make in their careers every day!
For more great tips on working with a chronic illness or disability, check out this WEGO Health webinar with Ilana Jacqueline and the University of Findlay’s Career Chat with Kara Maruszak.
In this follow-up to my first Q&A with artist Abi Stevens, she shares the story behind some of her new enamel pin designs. Abi funded her first collection of spoonie pins through Kickstarter, and her second campaign is wrapping up now. She also sells her work on Etsy. Read on to find out what Abi’s been up to and learn more about her new creations. Q: What inspired you to create your newest designs?
Q: How has the pandemic affected you and your art?A: It's definitely increased my stress levels, and at various points this has made it difficult to engage with creative work. I was lucky in that I didn't lose any scheduled work due to lockdown, and having external deadlines to work to made it easier to keep creating. Finding inspiration and motivation for my personal work has been more difficult though. I've focused on simpler, quicker pieces that are easier to work on when I'm struggling. I only went full-time freelance with my illustration and online shop late last year so it's been interesting trying to grow a business during such unstable times, especially as my business was too new to qualify me for government assistance! Q: Can you describe your creative process?
With these pins I already had a style in mind from previous designs, so I looked up various weapons I was interested in including for reference photos, then went straight into Photoshop. My research phase was mostly deciding which conditions I wanted to represent at this stage and discussing the choices and phrases with other Spoonies. Q: Do you follow a self-care routine?A: I try to but I have ADHD so I have trouble developing and sticking to routines. A big priority is to make sure I drink enough during the day (which I used to forget to do all the time), so I keep a water bottle at my desk. I have an app on my computer which reminds me to take screen breaks and this helps me remember to eat regularly and get up and stretch too. When I'm doing better with routines (the lockdown threw my previous self-care routine out the window) I take yoga classes, go to the gym, take hot baths/showers and massage sessions, which help me reduce severe muscle tension which is both caused by and triggers my Migraine attacks. I also do my best to regulate my sleep by going to bed around the same time each night. My biggest challenges right now are cooking proper meals and sticking to defined work/rest times. I have a habit of letting work bleed into my evenings and weekends.
I still do this sometimes by mistake, especially when I'm very invested in a project, but it really isn't worth it. Applying the standards of a healthy person's full-time office job to working for yourself while chronically ill is a recipe for disaster. I try to remind myself regularly that I don't have to achieve all of my goals all at once; the only timetable I'm following is my own, so I'm free to create one that doesn't compromise my physical and mental health.
If you want to share your talents and experience too, then go for it! Please be as honest as you're comfortable being, because I think it's important not to accidentally play into the erasure of our struggles, but the more of us out there sharing our stories and our creations, the more we can fight back against ableism and combat misconceptions. |
My name is Maggie Morehart, and I'm the creator of Incurable. Learn more.
Categories
All
More Places to Find Me |