Your Doctor Isn't Going to Tell You Everything

Hi, friend.

I'm really glad you found your way here.

If you're reading this, I'm guessing life has changed recently. Maybe you were just diagnosed. Maybe your vision has been changing for a while. Or maybe someone you love is navigating vision loss and you're trying to understand what they're experiencing.

However you got here, I want you to know one thing before we begin...

You don't have to figure this out alone.

I'm Kenisha.

I live with progressive retinal disease and legal blindness.

I'm not here to give medical advice.

I'm here to share what I've learned, what I wish someone had told me, and to walk beside you as a friend who's been there.

So grab a cup of coffee, get comfortable, and let's have another conversation.

Your Doctor Isn't Going to Tell You Everything

After I was diagnosed, I found myself replaying my appointments over and over in my head.

I'd remember something my doctor said and suddenly think, Wait... what did that actually mean? Or I'd be halfway home before another question popped into my mind. 

Could I still drive? Should I tell my employer? Would my vision keep getting worse? Was there technology that could help me? Was there anyone else I should be seeing?

The questions never seemed to come while I was sitting in the exam room.

They came later, when I was making dinner, lying awake at night, or trying to explain everything to my family.

At first, I thought I had somehow failed the appointment. Looking back, I realize something different.

I wasn't failing. I was grieving.

And it's incredibly difficult to absorb life-changing information while you're trying to process the emotions that come with it. Let alone do you know what to ask!

One of the greatest gifts you can give yourself is permission to realize that you don't have to leave every appointment with every answer.

Your Doctor Is Part of Your Team—Not Your Entire Team

One of the biggest lessons I've learned is that my ophthalmologist (or in my case also my Retina Specialist)  is an incredibly important part of my journey, but they aren't my entire journey.

They're there to diagnose my condition, monitor changes in my vision, discuss treatments, and help preserve the vision I have.

That's incredibly important work. I mean, years and years of schooling, and have to be incredibly intelligent. But, the vast majority of them do not understand what it means to LIVE with vision loss.

But after the appointment ends, I'm the one who has to figure out how to live with everything I just heard.

I'm the one deciding whether I feel safe driving. I'm the one wondering how to read my mail when the print becomes harder to see. I'm the one trying to explain to my children why I missed seeing something they pointed out. Those aren't medical questions. They're life questions.

Sometimes doctors have answers. Sometimes they don't. And that's okay.

Because there are many people who become part of your team along the way.

Ask the Question That Matters Most

If I could go back to that very first appointment, I wouldn’t spend so much time trying to understand every medical term. I would ask the question I didn’t yet know I needed to ask:

“How is this going to change the way I live my everyday life?”

 Not just what was happening inside my eyes. What did this diagnosis mean for the way I lived? Should I expect to need brighter lighting? Would I eventually benefit from assistive technology? Should I be learning new skills now instead of waiting until I absolutely need them? What resources should I know about?

Vision loss doesn't only affect your eyesight. It affects how you move through the world. Those conversations matter just as much as discussing test results.

You Don't Have to Remember Everything

Friend, can I tell you something? I barely remember what was said during that first appointment. It wasn’t because I wasn’t listening. I was trying to process information I never expected to hear while simultaneously figuring out what it meant for my life.

I was overwhelmed.

And if I’m being real, some days I still am.

When we're scared, our brains protect us in interesting ways. We go into fight or flight mode, or even fawn. I definitely did the flight and the fawn.

Sometimes that means we remember one sentence and forget everything else.

Now, I bring notes. If I think of a question before my next appointment, I make a note on my phone so I do not forget. 

If someone offers to come with you to an appointment, let them. Not because you can't do it alone. Because two sets of ears often hear more than one.

And if you're by yourself, that's okay too. Ask if you can take notes. Actually what I do, is that I record audio in a voice note, especially if I am alone, so I can have my partner help me understand later new test results, or what was going on. 

There is no prize for remembering everything.

There Are No "Wrong" Questions

Early on, I worried about taking up too much time. But those also felt like very rushed appointments, I would feel bad if I was taking up too much time.

I didn't want to ask something I thought I should already know. I didn't want to sound uninformed. Now I realize something. The only "wrong" question is the one you were too afraid to ask.

You might ask:

"What changes should I be watching for?"

"Should I see a low vision specialist?"

"Are there rehabilitation services in my state?"

"Is orientation and mobility training something I should consider?"

"What technology might help me continue doing the things I love?"

"Are there organizations or communities you recommend?"

Every question is really asking the same thing.

"How do I keep living my life?"

And that's a beautiful question.

Build a Team Bigger Than One Appointment

One thing I wish someone had told me is that my ophthalmologist wasn't the only person who could help me. There are low vision specialists who focus on helping people maximize the vision they have. There are vocational rehabilitation counselors who help people stay employed or return to work. There are orientation and mobility specialists who teach safe and confident travel. There are assistive technology trainers who can introduce tools that make everyday tasks easier. There are counselors who understand grief and adjustment. There are organizations filled with people who have walked this road before you.

You don't have to discover all of those resources today. But know they're there.

And over time, you'll build a team that supports not just your eyesight, but your life.

Right now, I see someone in every single one of these categories, plus MORE including my village of internet and Eko Vision Foundation family. 

Give Yourself Permission to Ask Again

One thing I wish someone had told me is that the questions don't stop. They change. The question you ask today may be completely different six months from now.

That's because you're changing. Your vision may change if you're progressive like mine, or just you as a person are changing. 

You're learning. You're adapting. I've asked the same question more than once. Not because I forgot the answer. Because I understood it differently after living with vision loss a little longer. That's okay.

Growth often sounds like asking the same question with new understanding.

Why I'm Sharing This

Friend, I don't want you to leave your appointments the way I left mine. Feeling like everyone else understood what was happening except you.

You deserve more than a diagnosis.

You deserve a conversation.

You deserve to understand your options.

You deserve to know what resources exist.

You deserve to leave feeling like you have partners in your journey.

Most of all, you deserve to know that your questions matter.

Because you matter.

Before You Go

Friend, before your next appointment, I'd love for you to write down three questions that have been living in the back of your mind. Not the questions you think you should ask. The questions that keep you awake at night. Maybe it's about driving. Maybe it's about your job. Maybe it's about your children.

Maybe it's simply, "What happens next?"

Two accessible tools I recommend for note-taking are Microsoft OneNote and Apple Notes. OneNote is helpful if you like having everything organized into notebooks and sections, and it works with screen readers, magnification, dictation, and audio notes—giving you options depending on what works best for your vision. Apple Notes is a great everyday option for iPhone and iPad users because it integrates with accessibility features like VoiceOver, Zoom, Dictation, and Siri. You can type, dictate a quick thought, create a checklist, scan a document, or ask Siri to capture something when looking at a screen just isn't convenient. The important thing is finding a note-taking system that adapts to you, rather than forcing you to adapt to it.

Bring those questions with you.

They deserve a place in the conversation.

Until Our Next Conversation...

Friend, I know this journey can feel overwhelming. Some days you'll feel hopeful. Other days you may feel frustrated, scared, or exhausted. All of those feelings are welcome here.

You don't have to figure everything out today. You don't have to have all the answers. Take one step at a time, give yourself grace, and remember that asking for help is a sign of strength, not weakness.

Most importantly, I want you to remember this: vision loss may change how you experience the world, but it does not change your value, your purpose, or the life you're still capable of building.

I'm honored to walk alongside you.

With you every step of the way,

Kenisha