Goals are great in theory, but the truth is life happens. When illness, family problems, natural disasters, and other uncontrollable events occur, we sometimes can't achieve the goals we had set. If such things keep us from attaining goals, we shouldn't beat ourselves up over it. I've stopped setting goals for my life and career because I have an unpredictable illness. Sure, I have dreams (go to Germany and Italy and either write or edit a best seller). Sure, I have a broad plan for what I want to do with my life (live frugally and work hard as a tutor and editor so that I can have a winter retirement home somewhere warm). Dreams and a rough plan are all I need. If problems come up, I'll deal with them then. If they don't, I'll try to achieve more. Ditch the SMART acronym. Ditch the deadlines. Do what works for you and your family. Let some other overachiever fret about weekly goals. Photo: Luke Hayter, Flickr Creative Commons Darla Nagel is an editor and writing tutor 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 be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com.
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I made this comment to the Chronic Fatigue Syndrome Advisory Committee, which gives recommendations to the Department of Health and Human Services, on January 13, 2017: My name is Darla Nagel, and I feel like a 70-year-old who body slammed a brick wall. Seven years ago, I was a healthy 19-year-old college student with two part-time jobs. Overnight, my case of myalgic encephalomyelitis (ME) began. Because I am one of the fortunate few with an effective ME specialist caring for me, the concern I’m focusing on today is the lack of quality medical education of ME. This illness affects 1 million Americans, according to a conservative estimate, and maybe millions more who haven’t been diagnosed. That makes the low number of trained specialists and the refusal of any medical specialty to take responsibility for caring for ME patients alarming. We need a higher priority and at least $100 million more in annual funding from the top. This would cause more health care educators to learn about this disease. Last year, I asked several professors and deans of high-ranking medical schools what they teach about ME, and they said practically nothing is taught. Also, I reviewed over 80 medical textbooks and found not many devoted more than one sentence to ME. Those that listed treatments overemphasized cognitive behavioral therapy and graded exercise therapy, but quality science has shown their potential to harm patients. Whatever happened to “first do no harm,” and why would someone believe a psychological therapy can cure a physical illness? Today’s medical school students can’t diagnose and treat ME patients. They aren’t taught the various sets of diagnostic criteria. They aren’t taught about beneficial treatments. They aren’t given funding to study ME. It’s no surprise that virtually no students are interested in specializing in ME in their research or clinical practice. If today’s few ME specialists retire with no one to replace them, any progress patients have experienced will be reversed. I will not sit and wait for that to happen. I will not wait patiently for the CDC to remove cognitive behavioral therapy and graded exercise therapy from its webpages about ME. I will not wait patiently for ME’s inclusion on board certification exams. I will act because we can’t wait any longer. I am not a malingerer. I want to be well, to work full-time, and to be useful to my country. If money talks, consider this logic: If I could work full-time, the American government would get more tax money from me. Multiply that by 1 million patients, and there would be that much more funding available for government programs. The income could even surpass the amount of money that needs to be given to ME education and research. I thank the Advisory Committee for letting me speak. The time for the Department of Health and Human Services to listen and act was decades ago, so I say this directly to that department: don’t wait any longer. Thank you. Darla Nagel is an editor and writing tutor 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 be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com. “This is not a disease of fatigue, though that is one of its principal symptoms. Calling it chronic fatigue syndrome is like calling Parkinson's disease chronic shaking syndrome or emphysema chronic coughing syndrome.” —Floyd Skloot, “Healing Powers,” in Kathryn Rhett (Ed.), Survival Stories: Memoirs of Crisis. Darla Nagel is an editor and writing tutor 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 be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com.
My first rejection letter for my memoir came, but it was personalized, which I’ve heard is a sign that you’re close to being accepted for publication. The compassionate editor wrote that my book was very well written and edited and conveyed my character and voice effectively but had little commercial potential. (To the unnamed editor: thanks for the positive feedback!) I know publishers are concerned about profits. Here’s how I respond: My book is for chronically ill patients ages 18-30 and for medical school students, an audience of more than 1 million readers, according to 2014 Census Bureau data and a story about the rising number of medical school students. I’m not giving up. My story and lessons learned need telling. Young patients must know how to live lives of value to them and society, and physicians must know how to work with patients compassionately. Photo credit: http://www.ruffrootcreative.com/, Flickr Creative Commons Darla Nagel is an editor and writing tutor 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 be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com. Chronic fatigue syndrome has a silly name that describes only one symptom of a multi-system disease. Probably everyone has long-lasting fatigue resulting from illness or life circumstances at least once in life. So, the name chronic fatigue syndrome poorly distinguishes patients with a devastating illness from the rest of the world. Then there's that word fatigue. It sounds wussy, like a smashing of fatty and league. Big whoop, a group of fat people yawning. Couldn't we use exhaustion, with that long second syllable expressing length and severity? Couldn't we use enervation, with that nerv sound pointing to central nervous system malfunction? There are better names out there, so let's use one of those instead: myalgic encephalomyelitis/encephalopathy or systemic exertion intolerance disease. Photo credit: Marco40134, Flickr Creative Commons Darla Nagel is an editor and writing tutor 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 be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com. Illness punched me in the face, but I punched it back and am starting to win the fight. Caveat: Not all illnesses can be fought in the sense of trying to live the way you did before becoming ill, and fighting this way can worsen some diseases. What you can do (and what I did) is adapt to the new life and keep searching for a treatment that helps. Photo: Jonathan Rolande, Flickr Creative Commons, https://housebuyfast.co.uk/ Darla Nagel is an editor and writing tutor 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 be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com.
I reviewed more than 80 textbooks, and only two mentioned the name myalgic encephalomyelitis rather than chronic fatigue syndrome. You can see my findings here: http://www.meaction.net/2016/07/19/medical-textbooks-in-mecfs-2-of-2/ Photo: Samantha Marx, Flickr Creative Commons Darla Nagel is an editor and writing tutor 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 be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com.
Darla Nagel is an editor and writing tutor 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 be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com.
One of the first times I rode the shuttle bus from my apartment complex to my college campus, I noticed a sign on the windows by the front seats: “Priority seating for the elderly and people with disabilities.” As an aspiring editor, I couldn’t avoid editing the sign in my mind. “Persons” just doesn’t sound right. Why not “people”? No, wait, you could replace that whole phrase with “disabled” to make it more concise. “Priority seating for the elderly and disabled.” Months later, I read a section about avoiding bias in a writing handbook. It said not to refer to people as their race, disability status, and so on. I thought, Duh, you’re not supposed to call someone “retard.” One of the examples given, however, was to write “people with disabilities” instead of “the disabled.” The wording of the first phrase emphasizes the people instead of the disabilities. It doesn’t make disabilities the defining feature of their identities; no, they are people who happen to have these challenges. Now I understood why the sign on the bus had been written that seemingly wordy way. I was ashamed of my rendition of the sign. I’ve advocated person-first language ever since. Darla Nagel is an editor and writing tutor 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 be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com.
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