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In July I attended a virtual summit for people with chronic illnesses hosted by Lisa Sniderman. The speakers included practitioners, counselors, and patients, and for me two interviewees stood out: Danielle Lowe (music therapist for people with mental health conditions) and Amy Oestreicher (author, health advocate, and survivor of an exploded stomach). Lowe said, “So I guess what I would offer up is to, even though it can be hard sometimes, to advocate for ourselves, to make an effort to advocate for yourself when it’s difficult for what you need, whether it’s an accommodation or extra time or a different appointment or extra appointment, less appointments, to really check in with yourself for what you’re needing and ask for it. And if the other person isn’t willing to kind of accept that then you shouldn’t, you should find someone that will, and never be afraid [of] asking for what you need or for more help.” Oestreicher said, “Hope isn’t like this inspirational beam of light that’s just like, ‘Okay, I am going to have hope.’ Hope is like a job that we have to actively create….Hope is the fuel that gets us down a road that’s uncertain.” If you want additional lessons learned from chronic illness, email me, and I’ll send them your way!  Hope gets us down uncertain roads. Photo: Jamie McCaffrey, Flickr Creative Commons Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
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“At nearly 20 percent of the U.S. population, people with disabilities represent one of the largest minority groups, but it has often been an overlooked one. That may be changing with a new wave of activism by those who want to change the way disability is viewed in the U.S.” —National Center on Disability and Journalism’s website We’re not seeing as much representation of people with visible and invisible disabilities in the media as we should given the recent surge in diversity/inclusiveness campaigns. Have you seen efforts to ensure vulnerable patients have easy access to personal protective equipment? Have you seen people using mobility aids or service animals in those ads that harp on how “we’re all in this together”? Now is the time to assert that our lives and our needs matter, too, and ought to be in the spotlight rather than shoved off to one side. What can people without disabilities do? Start by watching your language. Unless we ask to be called crippled, handicapped, impaired, or suffering, don’t call us that. We are people with disabilities, not the lifeless-sounding “the disabled.” Ask us whether and how we want our conditions mentioned in your writing and speeches. Then listen to us! You can learn more about acceptable versus unacceptable terms to use at the website mentioned above. The Americans with Disabilities Act was passed on July 26, 1990. #NCDJ30for30 Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email Darla.Nagel{a}gmail.com.
“Attitude is not everything, but it's almost everything.” —Mary Pipher This is a good quote to keep in mind as we rebuild following the worst of the COVID-19 pandemic. Happy Fourth of July, everyone! Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
Solve ME/CFS is a nonprofit that supports scientific research and physician and caregiver education on ME. Patients benefit from its research grants and free educational newsletter and webinars. I like keeping up with research developments and learning names of scientists who are interested in exploring ME. Without a new generation of researchers and clinicians focused on ME, we will lose the little progress we’ve made in the past decade. SolveMECFS.org has a large website, so I’ll narrow it down to the most useful parts: patient resources, whose audience ranges from those who don’t know what ME is to those who’ve lived with it for years, and scientific initiatives, including links to a patient biobank registry and patient narratives for medical professionals. This resource has been added to my list of resources for patients with ME or fibromyalgia. With Solve ME/CFS, you can get involved in advocacy campaigns or simply learn more about your diagnosis. If there are other resources you’d like me to share, let me know in the comments! Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
Want a new prayer to pray for yourself or for someone who has a chronic illness? Use these two prayers from the book A Year of Prayer: Lord Jesus, you are the Lord of our bodies and our souls. Teach us to care for the bodies you have given us, and remind us that they are temples of the Holy Spirit. Keep both our souls and bodies safe from all harm and danger today. In your name we pray. Amen. O Great Physician, your forgiveness brings us the healing we need. Yet so many remain afflicted with sickness and disease. Strengthen doctors, nurses, and all who care for the sick, that they may use the skills you have given them to bring comfort and relief. Encourage all who are ill with your presence and love, that they may put their trust in you. Amen.  Source: Long Thiên, Flickr Creative Commons Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
A mother’s love is an art more beautiful than any piece hanging on a wall or standing on display. It includes self-sacrificing concern for the emotional and physical needs of her children, no matter their age or ability to reciprocate. Mothers who care for their children with chronic illnesses and disabilities have a demanding role that I share my appreciation for every day. Thank you, mothers! My mom, who is just like me but better and taller, believed in my illness from day one, advocated for me in front of dismissive doctors, cooked my meals and did my chores, pulled me off couches when I couldn’t get up, and read pages from my memoir draft, and that list barely skims the surface. Thank you, Mom! Give your mom a hug, phone call, or whatever token of love and appreciation she wants today.  Mom and me having the chocolate fix of our lives in Germany in March 2014 Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
I received, from another writer with a chronic illness, a list of venues for disability-related writing. Check them out. Not only can publishing your writing be therapeutic, but it is also a powerful way to spread awareness of the experiences of people with disabilities. Don't be afraid to share your voice.
 Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com. The shelter-in-place order has its consequences for our social, emotional, and financial well-being, but a benefit of it is its opportunity to experience what life is like for those who have chronic conditions that leave them homebound. Such patients are used to decreased socializing, decreased financial and community resources, and increased isolation and loneliness. The current period is nothing new for them. They’re used to doing whatever it takes to maintain what health they have. Plus, they stay sheltered for months or even years, long enough for their careers to be ruined and their friendships to fade. We trust the coronavirus sheltering in place will be temporary and try to use this time to do the things we normally don’t have time to do. Why not also take this time to understand the needs of people who are usually homebound? Why not also take this time to show these people you care? If you have a chronic condition that is isolating, now is your chance to share your experiences with the world. Share this post or share your own experience. Stay at the top of others’ social media feeds. Make your voice heard! On the other side, we could see a brighter future for people with chronic illnesses and invisible disabilities. Let’s make a positive change!  Source: Sarah Wynne, Flickr Creative Commons Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com. Have you been belittled for having an invisible chronic illness, and have you tried treatment after treatment for adult acne? I said yes to both and read two articles this month that were both reassuring and informative. The first, from the March issue of Women’s Health, profiles eight women with chronic illnesses, including polycystic ovary syndrome and fibromyalgia, and their self-advocacy. “Owning It,” by Alison Goldman, can be read here: https://www.alisonmgoldman.com/womens-health-march-2020-owning-it The second is better if skimmed because it’s a medical journal article. However, it’s full of facts about diagnosing and treating, both with pharmaceuticals and with complementary (nondrug) approaches, acne in women. The article by Drs. Tan, Schlosser, and Paller can be read here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986265/ We stand to gain much if we advocate for ourselves and make informed decisions about our own health care. Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
I tried, really. Several books and research articles made me think this diet would help with my systemic hormonal imbalance, inflammation, GI upset, and acne. Going dairy-free, while still a way to benefit the environment, is not a way to benefit my personal health. I had zero improvement in my digestion, pain, and acne. Going forward, I'll restrict but not eliminate my consumption of dairy products and eggs (i.e., my breakfasts and baking will be vegan). If you're thinking of making any diet change while chronically ill, you have to talk to your health care professional first and ease into the change. For more background on why I tried this challenge, see my previous post. I am grateful for the products and resources I used during my dairy-free challenge. Coconut Cloud cocoa mix and Ghiradelli Twilight dark chocolate bars were my chocolate replacements. One of the resources I'd recommend to people considering changing their diets to benefit their health is The Complete Acne Health and Diet Guide by Dr. Makoko Trotter. His book is full of research, skincare ingredients to avoid, patient testimonials, and recipes. However, he recognizes that cutting sugar and dairy might be too much to ask and kindly summarizes the best course of action: Reduce sugar! The second is Alisa Fleming’s godairyfree.org, the companion site to her book. Various tabs cover health conditions the diet can ease, FAQ, product reviews, and guidance for baking and dining out. In short, too much dairy promotes hormone imbalance because of the hormones naturally and unnaturally appearing in milk. It's frustrating to still have my digestive system be malfunctioning. If you have an idea as to why this well-researched diet didn't work for me, let me know in the comments! Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to receive quarterly updates from her, sign up by emailing darla.nagel{a} gmail.com.
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