I Got Told My Blurry Vision Was The Result Of My Perfectionism

I Got Told my Blurry Vision was the Result of my Perfectionism

The Story of my Diagnosis & What to Learn From It

Receiving a life-changing diagnosis is a difficult and usually lengthy process – regardless of age. I share the story of my Stargardt’s diagnosis in the hopes of supporting those who have undergone, or are experiencing a similar process.

If that’s you: know you are not alone.

1️⃣ The First Signs – Optician

I first noticed something was wrong with my vision when I was about 15 years old. I couldn’t read the blackboard from the back of the classroom anymore 🧑‍🏫. Assuming what I needed was a fashionable pair of glasses, I went to the local optician, but she couldn’t find a lens that fully corrected my vision. My vision had already degenerated to 50% in my left eye and 30% in my right eye.

The optician came up with the strangest explanations. She even told me that she thought my blurry vision was a ‘result of my perfectionism’ 🥴 (don’t ever buy this nonsense)!

FOR PROFESSIONALS:
Lesson: if you don’t know what a client has, SAY you don’t know, REFER the client to a specialist, and DON’T make assumptions! 🤐

2️⃣ The Medical Exams – Local Hospital

At that point, my parents knew I had to see an eye doctor (ophthalmologist) at our local hospital. 🏥
This doctor first looked into my eyes to check my cornea, lens, and other parts of my eye. Then, I underwent an exam where I had to look into a hollow cavity, clicking a button whenever I saw a dot of light. 🧐 A liquid was also inserted in my eye to immobilize my pupil.

I remember being very nervous about this exam because I missed quite a few dots that appeared in the central part of my vision. The doctor assured me it was better to go to a specialized hospital, ‘just to rule out any serious diseases’ (not the best choice of words, I might add).

3️⃣ Specialized Exams – Eye Hospital

So, I did. I visited the ‘eye hospital’ in the Dutch city of Rotterdam. There, I underwent an exam of my optic nerve 🧠 (EEG-like stickers were applied to my scalp), as well as an exam measuring the sensitivity of my eye cells (photoreceptors). Additionally, they took a photo of my retina (retinal imaging).

Altogether, these procedures clearly pointed toward juvenile macular degeneration: the umbrella term used for genetic diseases that cause progressive central vision loss.

I recall the moment the doctor first said these words as if it were yesterday. He didn’t even look at me when he mentioned the term ‘Stargardt’; instead, he explained it to my father, who is also a medical professional. I remember feeling confused and ignored because he wasn’t addressing me, and I had to deduce from my dad’s reaction that it was seriously bad news 🥹. It was the first time that I saw my dad cry.

FOR PROFESSIONALS:
Lesson: Under NO circumstances should a medical professional ignore the patient, even if it is a child! First you talk to your patient, then the parents!

4️⃣ The Call – Final Diagnosis

To be 100% sure of the diagnosis, I had a blood analysis done at the Erasmus Hospital in Rotterdam. This test confirmed the diagnosis, as the analysts indeed found the abnormal gene that causes Stargardt’s disease.
They communicated the news through a simple phone call 📞. My dad told me it was a dry, emotionless announcement. No follow-up meetings were planned, nor was any information given about organizations that could help me with this new journey.

Nothing. Nada. Niente. Rien. I guess you can all figure out what the lesson is here 🙄. Hospitals should be better connected with institutions that offer psychological help post-diagnosis.