Generally speaking, the communication between a doctor and patient inherently represents a power imbalance, where the physician has more knowledge and control, as they act as a gatekeeper for both diagnoses and treatments. Further, the amount of time available for appointments is often limited, placing additional pressure on the patient to make sure their chief concerns are known, understood, and addressed.
AN INVISIBLE CHRONIC ILLNESS LIFE
I am a school psychologist, husband, father, and - pertinent to this website - an author who has multiple invisible chronic illnesses.
And an invisible chronic illness is a beast. On top of draining you physically, a chronic illness can impact all aspects of your life ranging from causing financial hardship to harming your relationships to dampening your spirits. Try to be cheerful when you have this unremitting “monkey on your back” known as an invisible chronic illness that constantly demands your attention 24-7. Needless to say, it’s easy to let yourself and others down.
Plus, your family or friends can't see your illness, as it's invisible, and they may not understand. Most with an invisible illness are familiar with “advice” ranging from “stay positive” to “you look good” to “Have you tried ___ for your condition?” Yup, you probably have, and it didn’t work.
On top of that, best wishes in accessing (and maintaining) high quality medical care when you are too tired to even take care of yourself.
Welcome to the world of an invisible chronic illness. I should know. I suffer from multiple invisible chronic illnesses, including a primary immune deficiency disorder and bronchiectasis.
But it doesn’t have to be this way - for you or for me. While I am not cured of my illness, I enjoy a fulfilling life and experience ongoing joy, peace, and happiness. Because of outstanding medical care, extensive self-educating and self-care, a supportive family, and a strong faith, I effectively manage my chronic illnesses. But I didn't want to be the only one to benefit. It was my goal, in turn, to give back to others by doing what I love to do: writing a newsletter and authoring books on these conditions.
Thank you for stopping by. I hope that by visiting this website and blog, and/or by reading my books, you will find yourself encouraged and your day just a little brighter.
Finding Joy with an Invisible Chronic Illness: Proven Strategies for Discovering Happiness, Meaning, and Fulfillment (Coming Soon!)
- Having Nasal Surgery? Don't You Become An Empty Nose Victim! (2007) (Independent Publisher Book Award)
- ¿Cirugía nasal? ¡No caiga en las garras del síndrome de la nariz vacía! (2015) (Spanish Translation)
I am passionate about advocating for those with invisible chronic illnesses, including empty nose syndrome, through the written word. For two years - in 2016 & 2017 - I authored a monthly newsletter for the International Empty Nose Syndrome Association (ENSIA).
Now, I hope to provide readers with updates on invisible chronic illness through a newsletter as well. This newsletter will include:
- an encouraging word;
- a humorous anecdote;
- tips and strategies;
- and/or thought-provoking musings on living with an invisible chronic illness.
I think those who battle invisible chronic illnesses, such as empty nose syndrome, are WARRIORS.