Should you call someone with an allergic disease a patient?
Is someone living with an allergic disease a forever patient? Many people may not realize that allergic diseases such as food allergies, asthma and eczema are chronic diseases, which according to the CDC are “conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both.”1https://www.cdc.gov/chronicdisease/about/index.htm
If you live with one of these conditions, we wonder when is it healthy to view yourself as a patient? Is patient a positive identifier outside of a clinical space?
Living with invisible chronic diseases2“Allergies are one of the most common chronic diseases. A chronic disease lasts a long time or occurs often. An allergy occurs when the body’s immune system sees a substance as harmful and overreacts.” (aafa.com) like food allergies and asthma can be challenging in everyday situations because you look healthy and may not always have to take medication. However, your activities and plans all have to accommodate your disease.
Living with an allergic disease
We used the term patient in our #EmpoweredPatient Program because a patient is a person “under medical care and treatment.”3Patient. Noun: “an individual awaiting or under medical care and treatment” (https://www.merriam-webster.com/dictionary/patient) If avoiding certain foods or allergic triggers is your medical treatment plan4 Treatment plan: “A therapeutic strategy that may incorporate patient education, dietary adjustment, an exercise program, drug therapy, and the participation of nursing and allied health professionals. Treatment plans are esp. important in the optimal management of complex or chronic illnesses.” (https://medical-dictionary.thefreedictionary.com/treatment+plan), you are technically considered a patient. Introducing the empowered qualifier, we are taking the patient mindset out of the clinical setting and into the real world. We believe you can live your most empowered life with an allergic disease.
Taking “patient” out of the clinic
When you treat your disease, be it for food allergies, asthma, or alpha-Gal syndrome, as a medical condition and communicate it this way, it is much easier to be taken seriously. Instead of using an emotional approach to communicating your needs with people who have never encountered an allergic disease, using facts to help them understand why you need what you need can be more effective.
When you become more comfortable being vulnerable in front of those you know and love, it allows more confidence to ask for what you need in public spaces, ultimately empowering you to be your own advocate.
-Two Alpha Gals
The more information you can give people at first will only lead to more inquiry about what it is like to live with x, y or z.
Reframing “patient” in the clinic
Patient is a highly debated term in healthcare because its root comes from to suffer or to bear5Do we need a new word for patients? (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1116090/). It has also been tightly associated with the patriarchal medical setting, where the doctor knows all and the patient listens and accepts. If what the doctor says is unrealistic for the patient, why should the patient end up bearing their treatment? Suppose the doctor’s plan does not match the patient’s lifestyle requirements, such as financial situation or daily routine. How can the patient be sure they are getting the best treatment and follow their treatment plan? This should not be a one-sided relationship.
As Gary Falcetano, PA-C, EA-C, mentioned in our Emotional Journey of Allergy Testing and How it Affects a Family panel discussion:
If you don’t feel confident about getting responses from your clinician, you need to be comfortable with their knowledge; not everyone has the same breadth of knowledge sometimes, it means looking for someone who has a better understanding who can guide you to the answers.
Being an empowered patient means being an active member of your healthcare team. An empowered patient engages in shared decision-making and takes ownership of what it means to live a fully realized life with an allergic disease. Yes, you are undergoing medical care, but you can also participate in every aspect of your experience.
Why we say we are patients
When first asked if “patient” was the correct term, Zestfull co-founders’ Kortney and Shahla’s gut reaction was, of course! We don’t mind being called a patient because we manage a chronic disease. When we see what a life with an allergic disease that can be easily misunderstood looks like, the connotations of the term patient drive home the fact that the way we live is out of necessity and not out of a lifestyle choice.
To take ownership of the term patient and reframe it in a positive context means taking control of what needs to happen to keep us safe. It helps us feel more confident in asking for accommodations and not feel like a burden, ultimately empowering us.
We are patients. But we are also mothers, brothers, fathers, painters, students, yogis, chefs, and hobby gardeners. We have many roles we play in life, and patient is just one of them. Why not make the best of it?
This article is part of the #EmpoweredPatient program, sponsored by Allergy Insider.
