Bonus: Exclusive Essay Readings from Laura Frégeau & Lindsay Ellis
Please note: This podcast is intended to provide information and education and is not intended to provide diagnosis, treatment, prevention, cure, or guarantee. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
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This bonus episode of the Made Visible podcast features the exclusive readings of two powerful essays written by students of the Made Visible Writing Class.
Laura Frégeau's "Seeking Care" takes a humorous tongue-in-cheek approach to the task of finding a caregiver who can attend to her needs when she can no longer care for herself. Laura describes a list of specific requirements for the ideal candidate, ranging from playing video games to having a good sense of humor and being able to set up Christmas decorations multiple times a year. The tone is light-hearted and humorous but underneath the surface, Laura sheds an important light on the little things in life that are often taken for granted.
Lindsay Ellis's "Dis-ease Done Right" offers a raw and honest reflection about the challenges of living with an invisible illness. She describes what it’s like to try and manage her condition while also trying to fit in with society's expectations of what a "normal" person should look like. Her essay portrays the huge emotional toll that comes with trying to find a job that accommodates her needs, trying to maintain relationships with family and friends, and the added difficulty of trying to navigate the healthcare system to find effective treatment and care.
Both essays provide unique and insightful perspectives that raise awareness to those who aren’t living with invisible illnesses, while also showing support for those who are.
Don’t miss out on the next Made Visible Writing Class where you can write, share, and connect with others who are living with invisible illnesses. Click here to learn more!
“Seeking Julie Andrews-type care provider for when my remaining faculties start to fade. Candidates will be considered according to the criteria listed below.”
Seeking Care
By Laura Frégeau
Seeking Julie Andrews-type care provider for when my remaining faculties start to fade. Candidates will be considered according to the criteria listed below:
Ability to play the latest Legend of Zelda release while I watch, an asset.
Must be able to place a screen protector with perfect symmetry, no bubbles.
Willingness to occasionally take an edible with me so we can sit and touch kinetic sand together for an hour, an asset
Must force my partner and children to take vacations without me.
Ability to pull up the perfect video of my kids as babies and toddlers to make me smile on any occasion, an asset.
Must know when I am in the mood to listen to the Broadway soundtracks my parents played on childhood road trips.
Willingness to set up Christmas four or more times per year so that I can enjoy holiday muppet movies and twinkle lights more often, an asset.
Must be kind and unreasonably polite to all nurses, orderlies, porters, adapted transportation drivers, and any other of my care providers.
Ability to narrate life with kind humour, an asset.
Must question doctors or other authorities who are not considering my individual context and best interests.
Willingness to let me care for you in any way I can, an asset.
Must be willing to peel all the white stuff from each individual segment of a clementine.
If you meet any or all the criteria above, please send a cover letter and resumé to my partner and children. They will tell you stories to let you know the kind of person I am and what makes me laugh.
“Try to inherit your grandfather’s piercing blue eyes. If you didn’t, try to have a feature people can compliment so you can use your outer appearance to distract them from your inner disease.”
Dis-ease Done Right
A modern how-to guide for life with an invisible illness
By Lindsay Ellis
Look normal. Be sure to keep all of your limbs. Try to inherit your grandfather’s piercing blue eyes. If you didn’t, try to have a feature people can compliment so you can use your outer appearance to distract them from your inner disease.
Get a job.
Develop chronic pain. If you can’t have chronic pain, make sure there is some sort of discomfort or inconvenience to everyday life.
When coworkers ask how you’re doing, list off your symptoms. When they ask you the next day if you’re feeling any better, say “no.” When they ask again out of exasperation the day after that, tell them you’re “fine.” Stop bothering to tell coworkers to avoid seeing their eyes glaze over. All they really want to know is when you’ll get them the latest deliverable.
Leave that job because your body can’t handle being solely a butt in a chair. Feel like your career has stalled while all of your friends get promotions.
Go to the doctor. The one who used to be an ER doctor. Be told, “it’s all in your head.”
Say yes to a night out on the town with your college friends. Have two drinks, get a migraine, and start vomiting. Be told, “you should really settle down cause you’re not in college anymore.” Spend the next three days in bed recovering.
Try to find a job you can do from home. Tell people you are looking for a WFH job. Have an old acquaintance from high school reach out. Meet her for coffee. Realize she just wanted to recruit you to her MLM. Know you definitely do not want to be a part of an MLM. Have no other job prospects.
Go to another doctor. The one who cured your friend’s acid reflux. Be filled with hope they will save you. Arrive with a list of questions that will never be answered. Be dismissed with a prescription that treats just one of your symptoms but doesn’t provide you with a diagnosis.
Take that prescription and develop every side effect mentioned. Be worse off than you were without the prescription.
Lie in bed. Ask yourself questions with no answers.
Why can’t my body handle being in an office 9-5? Why do I have to fight for my health?
To be seen? To be taken seriously? To not be considered a burden to society? Why can’t
my life just be ‘easy’?
Wonder “why me?”
Try to go freelance. Realize that’s just a butt in a chair at your house but without health insurance.
Go to an alternative medicine doctor. The one who looks like a TV McDreamy doctor. Have that doctor actually listen to you and run a battery of out-of-pocket tests. Get a long list of things that are wrong and a treatment plan that involves experimental drugs, supplements that no insurance plan will cover, and a restrictive diet.
Say yes to going to a pub with your family for dinner. Order a side salad with no dressing cause it’s the only thing that fits your new diet. Be told, “you really should indulge and live a little.” Try to explain you have to avoid FODMAPs, a thing no one has ever heard of. Have your dad roll his eyes, cause “you’re just looking for attention.”
Try to start a business. Pick out a name, build a website. Acknowledge you have no customers cause starting a business is hard.
Be your own sales rep. Need a sick day but don’t take it cause you are sales and marketing and operations and IT. Run yourself into a never-ending flare-up. Realize running your own business is working even longer hours with no health insurance. Decide to quit your business.
Start to feel better. Be told by family, “alternative medicine isn’t ‘real’ medicine and it’s just the placebo effect.” Try to explain that your symptoms are actually improving.
Start to get a herx reaction as the harmful microorganisms in your body die off. Have no one understand cause no one knows what that is.
Feel worse. Question whether the feeling better was because you so desperately want to be better or if the diet, supplements and meds were actually helping.
Try to find a job again.
Go to an integrative medicine doctor. The one who promises to blend Eastern and Western philosophies. Pay out of pocket for them to rerun the battery of tests. Get a new list of things that are wrong that prove the old list was incomplete. Abandon all previous medications and supplements for a brand new regime of experimental medications and supplements that no insurance plan will cover.
Say no to the all-inclusive trip to Mexico your girlfriends are all planning cause you spent all your money on your health. Be told, “you’re really no fun anymore.”
Get discouraged. Have chronic fatigue. Become really depressed because you’re suffering every day.
Discover you will be experiencing new medications, doctor’s appointments, new symptoms, new diagnoses ad nauseam. An infinite loop of good days and flare ups, naps and insomnia, knowing what is going on in your body and having no fucking clue what’s happening. Days when you’re ready to take on the world and become a millionaire, and days when you worry you are destined to be broke.
Lie in bed. Ask yourself questions with no answers.
Why should I be exempt from the painful experiences of life? Why shouldn’t I be the one
who has to fight for my health? Battle an invisible illness? Could I actually be
experiencing more joy during happy times because I know the pain and darkness of
disease?
Wonder “why not me?”
Join the next Made Visible Writing Class!
An 8-week writing class for people living with or affected by invisible illness. Write, share and connect with others in a safe and supportive space. This class will also include guest teachers who will share their experience with writing, sharing and publishing their invisible illness stories. Class begins March 29th! Click here to learn more!