Keratoconus: Empowering or Embarrassing?

Keratoconus: Empowering or Embarrassing?

by Brian Chou, OD, FAAO, FSLS

  • June 13, 2022

If you have keratoconus, you may wonder whether to embrace it, or if it is a social stigma. The short answer is it depends on your perception. Yet with the excellent treatments today for keratoconus, most eventually view their condition as a source of empowerment.

Identity-First or Person-First Language?

Some individuals find their keratoconus a central part of identity. Take for example autism (“I’m autistic”), deafness (“I’m deaf”), albinism (“I’m albino”), diabetes (“I’m diabetic”). Yet others with these same conditions do not feel defined by it and may instead say, “I’m pescatarian with autism”, “I’m a parent that is deaf”, “I’m a musician with albinism”, or “I’m Hispanic with diabetes”. This is a good time to pause and contemplate, are you keratoconic – or are you a person with keratoconus?

Keratoconus is not a conspicuous condition. Unlike having a disfigured eye or cosmetically noticeable eye turn, most with keratoconus look the same as others. However, keratoconus can be frustrating, particularly without appropriate care and guidance. Some with keratoconus do not wish to share their diagnosis with others as it is personal to them. Yet some want others to know about their keratoconus, whether motivated to help others, let others understand them better, signal the ability to overcome hardship, seek attention, or some other reason.

Help Others Understand You

Since keratoconus is not in the public vocabulary, it usually does not help a stranger understand you better whether you use identity-first language (“I’m keratoconic”) or first-person language (“I have keratoconus”). It is more helpful to explain to the layperson that keratoconus is an uncommon eye condition that does not respond to traditional treatment and causes distorted vision. Otherwise, you may get the common refrain, “Why don’t you just get LASIK?” Of course, keratoconus is an absolute contraindication, since LASIK can disastrously worsen the corneal distortion in keratoconus by thinning the delicate cornea even more. However, your gravitation toward first-person or identity-first language, can guide your eye doctor into understanding your frame of mind. It can also help you understand your own relationship to keratoconus.

Your Identity with Keratoconus Matters

Many eye doctors are not yet familiar with the concept of identity-first versus person-first language. With that said, I routinely care for patients with keratoconus, and I default to a patient-first perspective. I recognize that patients with keratoconus are unique with their own hopes, aspirations, and vulnerabilities. Many with keratoconus have had frustrating prior eye exam experiences. These previous challenges, whether a source of empowerment or feeling of despair, indicate that a significant amount of time and attention has gone towards managing their keratoconus. It is only natural in these cases for keratoconus to become a central part of their identity.

Nonetheless, a strong identity with keratoconus should be transitory. With appropriate eye care, most with keratoconus can lead normal, if not remarkable lives. That way, focus starts with taming keratoconus. Then, upon reaching a desirable outcome, focus can go toward more fulfilling endeavors like time with family, friends, faith, and work. To think of this another way, how many would want their epitaph to memorialize having keratoconus among other health conditions, as opposed to describing a retired teacher that was a loving parent, and selflessly served their community? Take for example one of the greatest basketball players of our time, Steph Curry. He just so happens to also have keratoconus. Keratoconus does not define him, and nor should keratoconus define you.

For those with keratoconus, a healthy identity with keratoconus is one that enables you to transcend the eye disease. This is not something you can achieve alone. It requires a good real-life relationship with an eye care practitioner with experience, expertise, and the desire to bring you a desirable outcome, along with adhering to multiple and ongoing visits.

Make Keratoconus Part of You, Not Everything You Are

Keratoconus has a known genetic link and is associated with high astigmatism. It is not brought about by behaviors that may invite moral judgement like drinking, substance abuse, or promiscuity. For that reason, there is no reason to feel embarrassed by keratoconus. If anything, keratoconus is a surmountable obstacle with appropriate and timely eye care. Overcoming keratoconus is a gift which can give you the confidence to tackle other life hardships. Today, with treatments like corneal cross-linking and scleral contact lenses, there is no better time to have keratoconus. Keratoconus is about abnormal astigmatism, not a social stigma.

Yes, you can likely take control of your keratoconus. While it might consume your thoughts, particularly if you are newly diagnosed, you need not remain trapped there in perpetuity. With professional help, it is reasonable to eventually look in the rearview mirror and embrace keratoconus as part of what makes you uniquely human.

After Success Over Your Keratoconus, Consider Giving Back

If you have reached success over your keratoconus, please consider helping others with keratoconus. One of the best resources for newly diagnosed patients with keratoconus is the National Keratoconus Foundation. You can donate to NKCF to help raise public awareness, facilitate research, and support other keratoconus patients in their journey in overcoming their condition.


ReVision Optometry in San Diego is a referral-based practice providing medical contact lens services for patients with keratoconus and other complex eye conditions.  Request an appointment online or call 619.299.6064.