In a medical context, the word “patient” conjures different images and emotions for every person that uses it. For some, it signifies bravery in the face of vulnerability. For others, the origin of the word (from Latin, patientem, meaning suffering) is enough to make them feel it is pejorative. They think the term is outdated and doesn’t do enough to represent their experience.
In the world of rare diseases, those afflicted with illness are rarely in a position to patiently wait for the healthcare calvary to come and save the day. More often than not rare disease patients don’t display very much patience when it comes to treatments and care. The unfortunate truth is that if they did, it would be too late. Engage with any rare-disease community, and you are bound to hear a series of common grievances: uphill battles with multiple misdiagnoses, doctors who know very little about the disease, and non-existent treatment options because the disease isn’t common enough to warrant the attention of drug developers.
Seth Rothberg, co-founder of Our Odyssey and patient-advocacy consultant, says, “Being labeled a patient makes me feel limited in what I can actually bring to the table. I’ve learned that I cannot be defined by my condition or as just a patient because there’s more to me than that.” He continues, “I think ‘community member’ is a great alternative since the word ‘patient’ limits who can participate in a survey. As we know, it’s never an individual diagnosis, but a family one since the family has to adjust to a new normal.” He brings up a valid point. The people diagnosed are rarely the only ones involved in the process. They have support systems made up of friends, family, and other caregivers who help shoulder the burden.
But using a term like “community member” might not be exclusive enough for certain conversations. Many times, the phraseology has to specifically refer to the person afflicted with the disease. Which is why we think that instead of changing the word “patient” we think we need to change the way we think about the word. Sure, the etymology leaves a lot to be desired, but it comes from the very distant past. The future of the definition is in the hands of contemporary community members who live in a world where they need not be held down by narrow connotations. They are individuals that have changed so much of the medical landscape so far, and altering the perception of a single word is well within their incredible abilities.