Dear optometrist: 

Some scleral lens patients are every doctor's dream.

• They are easy to fit, AND:
• They are not daunted by the size of the lens or care requirements.
• They pick up the application and removal techniques immediately and never look back.
• You send them away with lenses and they come back only to tell you how wonderful everything is going.

Then there's US. The Normal People.

Regardless of whether we were easy to fit or not, here is what it might look like once the fit is nailed.

• It might be weeks or months before we are thoroughly confident about application and removal - or we might still struggle with bubbles a long time later. 
• Our eyes might burn if we use your favorite brand of preservative free saline in the bowl of our lenses. 
• Our lenses might fog up predictably 90 minutes after we put them in.
• We may have plateaued at 10 hours of wear, but our post RK vision is so distorted upon lens removal that... our day is effectively over when the lenses come out, and that's too short of a day for us.
• Our lenses just never seem clean, no matter what we do.
• And on, and on, and on.

There are a lot variations of all of these themes. 

And you thought the challenge of scleral lenses was all about the fitting process.

It's not.

No matter how long and complicated a fitting process might get for a challenging patient, it may still be considerably shorter and easier than that patient's adaptation process.

Here are some suggestions from the patient's perspective about how you can build a standout scleral lens practice:

1. We patients need training.

We don't need to be quick, or efficient, or elegant in our lens application and removal techniques - those things will come with time. But we do need to be able to put our lenses in and take them back out safely and reliably. If you are giving us lenses to wear before we have reached that standard, you really shouldn't be.

Our mirror is NOT an acceptable stand-in for your eyes keenly focused on our technique or lack thereof.

Our mirror will not tell us when we've been trying too long, it won't tell us when we may be in danger of giving ourselves abrasions.

Only after we have a lot of experience will our mirrors find their tongues and start telling us what we need to know.

In the meantime, we need either you or your thoroughly trained technician. If you honestly prefer to do all the training yourself, great, but if not, your tech needs to become an expert in not just one but all of the tools and techniques of this trade, because if you continue fitting scleral lenses, you will have patients who don't fit the mold and need a different approach.

2. We also need LOTS of written instructions.

We may smile and nod and seem to comprehend. We may look calm, happy, even excited - while we're in the chair.

Then we get home. And we don't remember anything, and we panic. 

Scleral lenses are complicated and they are a much larger burden on us patients than you may ever fully appreciate. If you really want to set us up for success, you've got to put everything we need to know, and everything we need to buy, in writing.

This includes - but definitely is not limited to:

Solutions

For every saline, cleaning or disinfection solution we need, please put in writing:

• The name of the solution
• What it is used for, when, and how
• Reliable sources to buy it from, if possible, so that we will know what the reasonable price range is and can distinguish it from the crazy scalper prices on Amazon when there are shortages
• The name of an alternative solution if we are not able to get your first recommendation, because there are often shortages, many items are not sold locally, and our pharmacists do not know what you know

Application and removal techniques and tools

Diagrams, a recommended video, bullet point lists of steps to follow... it's all good.

We also need the exact names of the tools you put in our starter kit. Are you aware of how many different plungers DMV makes? How could we know which one you gave us, unless it's written down somewhere? We don't want to order the wrong ones by mistake. And those lens applicator rings - how are we supposed to know if the right one is the one for a "mini" scleral versus a scleral? My lenses aren't mini, but... how big is big enough to qualify?

Recommended wear time

Based on my medical condition and this lens type, am I OK with wearing my lenses 12-14 hours a day from the get-go? Do you want me to start with fewer hours? If I wear them all day, do you want me to remove and re-fill and re-apply them once or more during the day? Don't leave me at the mercy of Facebook for such fundamental decisions.

Red flags

I need:

• a little bullet-point list of things that should prompt me to stop wearing my lens(s) and call your office
• a little bullet-point list of things that should prompt me to get in touch before my next scheduled appointment.

I have no magical way of knowing what qualifies as a concern, and my Facebook group obviously doesn't either, because some of them are telling me to call your answering service on the weekend while others are telling me this is normal and I shouldn't sweat it! HELP!

3. We also need you and/or your staff to be available.

We don't want to feel like a nuisance when we have what seems to us a legitimate concern. 

These lenses are our lives. For many of us, they make all the difference between being stuck at home and getting to work or school.

If something goes wrong, that's seriously messing with our lives. We need to know that when it's not working, we can call your office and be told something other than "You have a follow-up scheduled for the month after next."

You get the idea.

Scleral lens fitting is a major commitment. Scleral lenses cannot just get handed off to the patient once the fit appears correct.

The adaptation process is everything, varies greatly from patient to patient, and requires committed support, without which patients may be not just unhappy, but put at risk.

"Doing" scleral lenses is all about investing in training, instructions and commitment to providing ongoing support. That is what it will take to have consistently safe, successful patients.

p.s. We'd love to talk to you or your tech anytime.

By "we" of course I mean "me" (Rebecca). Reach out anytime.

p.p.s. Other special requests from us patients

(I'm leaving this open for additions from other scleral lens users... if you are a scleral lens user, tell me what I'm missing and I'll add it here!)

• If you ever leave your practice, please make sure you give us the name of someone just as knowledgeable and devoted as you are that we can go to! Even as "veterans" of scleral lenses, having a really good resource is extremely important to us.