If you have just recently been diagnosed with keratoconus, or have been living with it for some time, you may be wondering how or when to share your diagnosis with loved ones. It may seem nerve-wracking to open up to family, friends, or even on social media, but sharing your diagnosis is an important step towards accepting your condition and receiving support from others. In fact, it may even help by connecting you to someone else who is living with keratoconus, or someone who has a similar health issue they are struggling with themselves.

Although it may seem like it at times, it’s important to keep in mind that you’re not alone in your keratoconus journey. Sharing your keratoconus diagnosis with others can help you to recognize that. Continue reading for some tips on how best to share your diagnosis with others.

Talking to Family

Whether you are still processing the news of your keratoconus diagnosis, or if you’ve been mulling it over in your head for a while now, it’s a good idea to consider sharing the news with your family (or friends who are like family). However, before you tell them, try to plan what you’re going to say. Your family will likely have a lot of questions, such as What is Keratoconus? and Is there a cure? To better answer their questions, it’s helpful to have some informative resources available that you can share with them.

Family is one of the biggest support systems you can have, whether it be in person or even over the phone. They can help you make important decisions pertaining to your keratoconus treatment plan. They may even help by accompanying you to appointments, picking up prescriptions, remembering something you might have forgotten, or asking a question you hadn’t thought of. They can also offer support by driving you to and from your iLink® procedure. Using Photrexa® Viscous (riboflavin 5’-phosphate in 20% dextran ophthalmic solution), Photrexa® (riboflavin 5’-phosphate ophthalmic solution), and the KXL® system, the iLink® corneal cross-linking procedure is the only FDA-approved therapeutic treatment for patients with progressive keratoconus and corneal ectasia following refractive surgery.*1 

Confiding in Friends

In addition to your family, friends are also an excellent support system. Before confiding in your friends with your keratoconus diagnosis, think of your friend circle and decide who may be the most receptive and supportive. You might only want to share with your closest friends, and that’s okay! Like family, they may be willing to help by accompanying you to doctor’s appointments or driving you to the doctor’s office.

Friends can also help to cheer you up if you’re feeling down and distract you from pondering over your recent diagnosis. It’s a great idea to meet up with a friend to see a movie, take a walk together, or share a meal to boost your spirits.

If you share your diagnosis with your family first, it might feel easier sharing the news with your friends because you know what to say, how your family reacted, and what questions they asked. When opening up to friends, it’s important to remember that you only need to disclose what you’re comfortable sharing. They may be interested and surprised to know that even some professional athletes, like NBA player Steph Curry, have keratoconus as well!

Sharing on Social Media

Sharing your diagnosis on social media can be another great way to gain additional support. It can give you the opportunity to connect with others who are also going through the same thing or provide an outlet to spread awareness about keratoconus and the available treatment options.

In addition to sharing your diagnosis with your followers, there are many resources online and on social media for those living with keratoconus. These resources and online communities allow you to connect with others, hear their stories, and even have a conversation. Some helpful resources include the Living with Keratoconus website, the National Keratoconus Foundation, or the Keratoconus Group. 

Time to Get Sharing!

There’s no right or wrong way to share your diagnosis with others. You may only want to confide in one person, or you may decide to announce it to hundreds of followers. You might rehearse what you’re going to say for hours, or you might just think on your feet. The point is, just find what works best for you.

If you want to keep your news confidential aside from those you’ve confided in, make sure to specify that when you tell them. Additionally, be prepared to receive advice from them, even if you don’t want it. It can sometimes be helpful to have a noncommittal response prepared, such as, “Thank you for your opinion! I’ll keep that in mind.”

You deserve support throughout your keratoconus journey. Once you share your diagnosis with others, you can focus on your health and happiness with their support.

If you’re interested in hearing from a few people who have been willing to publicly share their stories, you can read their Keratoconus Journeys here. Additionally, if you would like to publicly share your Keratoconus Journey on our Living with Keratoconus website, we’d love to hear from you. Please contact Lynn Gray at lgray@glaukos.com for more information.

For more information on keratoconus or available keratoconus treatment options, such as FDA-approved cross-linking, visit our website and follow us on Facebook, Twitter, and Instagram.