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I’m sharing my experience today because I’m fortunate to be having a relatively good day with my eyes, allowing me to spend more time in front of a computer screen. I’ve discovered the importance of embracing these good moments for productivity and joy while navigating through tougher days with self-care strategies, ice packs, and engaging podcasts.
My battle with ocular rosacea commenced about 18 months ago when I started feeling discomfort with my contact lenses. After two decades of wearing them, I found myself needing to cut back on wear time until I couldn’t tolerate them at all. Initially, my optometrist diagnosed me with dry eye, but it wasn’t until six months later at a dry eye clinic in Toronto that I received my definitive diagnosis: ocular rosacea coupled with meibomian gland dysfunction. The tiny blood vessels along my eyelids indicated rosacea, which hindered my glands from producing the oily layer of tears. Without this essential top layer, my tears evaporated almost instantly.
The dry eye symptoms are quite bothersome, but the rosacea flare-ups are truly debilitating. During these flare-ups, I deal with photophobia (sensitivity to light), and my eyelids feel like sandpaper. Blinking or looking at my phone becomes painful, and driving is out of the question. While some individuals experience significant redness, my eyes often appear normal.
I’ve tried numerous treatments for ocular rosacea, but it remains a chronic issue. The standard first-line treatments include oral antibiotics (which didn’t work for me), topical steroids (which caused extreme rebound inflammation), and prescription anti-inflammatory eye drops like Restasis and Xiidra. After being on Restasis for seven months, I believe my symptoms have improved by about 10-15%.
I’ve also explored various in-office treatments, including Intense Pulsed Light therapy. While these treatments usually cause initial flare-ups, I believe they have ultimately provided some marginal relief. I’ve also experimented with elimination diets, supplements, hot compresses, and maintaining lid hygiene. I’ve tried most available treatments in Canada, many of which aren’t covered by insurance, leaving me thousands of dollars in with minimal results. Yet, I refuse to lose hope. I’m confident that one day I’ll discover the right combination of treatments that will enable me to function more fully again. Although flares may always be part of my life, my husband often reminds me, “higher highs and higher lows are the goal,” a stock market metaphor that resonates with my experience.
This condition has undoubtedly impacted my mental health. During flare-ups, I often find myself worrying that this discomfort will never end. When I’m between flares, I am grateful to function normally, but resentment can creep in. Why is this happening to me? Will I ever be able to wear contacts or makeup again? These concerns feel superficial, especially since I’ve dedicated the past decade to building a career as a singer/songwriter. Not being able to wear makeup on stage or during promotional events poses a significant challenge.
I often wonder if my condition will stabilize enough for me to make professional commitments again. Although I’m aware that my condition is not life-threatening and that many endure far worse, I must allow myself to acknowledge the pain this journey has caused me both mentally and physically.
Like many with chronic conditions, I am on a quest to understand why this is happening to me. Doctors have not provided much insight into the root cause, aside from the fact that many people develop rosacea in their thirties, and I happen to experience symptoms in my eyes.
As a mother to two young boys, aged three and five, I am fortunate to have a supportive partner with a stable job who has been there for me throughout this challenging time. We have help with the kids when I need to rest, and we can afford my treatments. We are indeed among the lucky ones.
If you are experiencing eye discomfort or signs of dry eye, do not underestimate it. Seek the advice of an eye care professional. Untreated issues can lead to the atrophy of those vital meibomian glands. If your eyes are healthy, take care of them! Remember to wash your face, remove your makeup, avoid sleeping in contacts, and keep your brushes clean (I say this with affection)!
If you relate to my struggles or face any chronic invisible condition, I see you. I feel your pain. I hope, like me, you are learning to ride the waves, breathe deeply, cherish yourself, and hold onto hope for a brighter tomorrow. For more insights, you can check out this blog post which discusses similar experiences and challenges.
In Summary
Ocular rosacea is a real and challenging condition that impacts both physical and mental health. While treatments vary in effectiveness and can be costly, maintaining hope and seeking support is essential.
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