A year before I received an official diagnosis from my immunologist, I watched a video from my Snapchat subscriptions. Entitled "Bubble Girl is Allergic to Life," I learned about Brynn Duncan, a young woman living with a severe form of mast cell activation syndrome. After finishing the video, I realized that I had experienced many of the same symptoms. Seemingly out of nowhere, I too had developed many allergies and it had become easier to list the foods that I can eat rather than those I avoid. It was her own research that prompted her to come up with her own diagnosis and seek a proper specialist, and I was determined to do so as well.
The research did not stop at my diagnosis; it had merely just begun. Chronic illnesses tend to evolve, as must our response to them. There are always good days and bad days, days where you may have virtually no symptoms and days where everything flares. I have found education to be critical to understanding these ups and downs. While I may not be able to cure myself of my condition, I must acknowledge that my behavior and involvement in my treatment can greatly improve my quality of life.
Education is empowering. It equips us with the knowledge we need to enter doctors' appointments informed and ready to ask questions. It allows us to seek new options and demand better care. Education encourages us to set personal goals and have better outcomes. As patients, we often have to be our own advocates, and education is what legitimizes such efforts.
A study published in the Journal of the American Osteopathic Association demonstrated that a health literacy program led by second-year medical students greatly improved self-monitoring and insight, positive and active engagement in life, and the emotional well-being of patients with chronic illnesses. After speaking with their physician for 15 minutes (the typical length of an appointment), the patients were given 45 minutes to discuss their diagnosis, prescriptions, and prevention measures with the medical students. Until a similar program can be implemented as a global standard of care, we must take the time to educate ourselves.
Where can we become more educated about managing an invisible illness? Aside from a simple google search, I have turned to patient advocates like Brynn Duncan to learn more about living with chronic illness. I look for platforms that are encouraging, informative, and relatable (and I am a sucker for motivational posts and a pretty aesthetic). Nonetheless, I want to remind you to consult with your doctor before starting a new treatment plan. Invisible illness is rarely black or white; it lies on a vast spectrum with tremendous variation. Medications and therapeutics that may work for one person could cause adverse reactions in someone else, and it is important to contact your physician with questions or concerns about your management plan before changing your normal routine.
With this in mind, I wanted to share a few of my favorite patient advocates and their platforms for invisible illness awareness and education.
1. Brynn Duncan, @brynnkaitlin
On her Instagram and blog, Brynn chronicles her experience with Mast Cell Activation Syndrome, Dysautonomia (Postural Orthostatic Tachycardia Syndrome- POTS), Ehlers-Danlos Syndrome, Gastroparesis, and Adrenal Insufficiency. She often features her adorable Medical Alert Dogs Moose and Toby, as well as the trials and tribulations that come with an invisible illness.
2. Carolyn Rivkees, @chronically_cheerful
Carolyn was diagnosed with chronic migraines and anxiety and shares daily positive messages to keep people inspired. She advocates for holistic health techniques for pain management and mindfulness.
3. Lozzy, @heylozzy
Lozzy suffers from fibromyalgia and suspected POTS, and she is also an advocate for mental health issues. She shares her experience as a patient who is invested in their treatment while being supportive of all of her followers' journeys with invisible illness.
4. Brooke, @lupuswithaflair
Brooke is a mother of four that posts about her everyday battle with lupus. Not only does she enjoy telling her followers about the new things she tries to manage her lupus, but she also has an affinity for fashion. Her blog is filled with articles that share these sides of her life.
5. Lara Bloom, @lara.bloom and @ehlers.danlos
Lara Bloom is President and CEO of the Ehlers Danlos Society. As an EDS patient herself, she is involved in significant advocacy efforts for EDS, hypermobility spectrum disorders, chronic illnesses, and rare diseases. She is a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, an ambassador for Global Genes, an advocacy committee member for Rare Diseases International, and a Co-investigator for NIHR CONCORD: CO-ordiNated Care Of Rare Diseases, among many other patient expert positions.
6. Yazzi, @yazzitalks
Yazzi was diagnosed with Multiple Sclerosis in 2017 and started her Instagram page to shed light on her journey with MS. Her colorful posts and bubbly attitude are bound to put a smile on your face. In addition to sharing information about MS, she also advocates for PCOS and IBD online.
I hope that these advocates have inspired you to empower yourself through education and involvement in the invisible illness community. Let us know who your favorite invisible illness advocate is in the comments section below!
How can you get involved with The Invizibles?
You can share your story! I am starting a special series as part of the weekly blogs in which I interview others that have struggled with an invisible illness. If you are interested in sharing your experience, please email theinviziblesorg@gmail.com.
I am also holding a printed-collage fundraiser to raise money for invisible illness research, Custom-made collages can be printed and shipped to your doorstep, and 100% of the proceeds will go towards scientific research funding. Fill out this form and you will be contacted for confirmation: https://forms.gle/faEuEiuzZ2vL4XUS7.
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Invisible illnesses present hidden challenges; let's uncover and solve them together.