Incurable Isn’t a Diagnosis—It’s a Lifestyle

As a child, I never conceptualized what a lifelong condition is. I understood my doctors and parents when they lectured about staying disciplined with my treatment and lifestyle because of my conditions, but mostly because I’ve always followed the rules—new rules, new authority figures, my doctors. It was the fact that it’s incurable—this is for life, Kareema—that is only now fully registering. Yes, I have delayed reactions, but let’s start with the first diagnosis. 

I was about twelve years old, and I thought I was going to get prescription glasses, but instead received a diagnosis that changed my reality. Not only is my vision poor, but I have Glaucoma, well, the precursor, but let’s keep it simple and not too technical. At that age, the only thing I comprehended was not to lose my glasses and take my eye drops twice a day. Not the consequences if I don’t follow instructions, or that this is my new life. I unknowingly entered a marriage with healthcare professionals and eye drops, as it stands now, until death do us part. Because two facts are true, I have to take my drops and stay on top of my eye appointments; there is no one without the other. 

It wasn’t until I started college that it fully registered that if I don’t stay on top of my health, I will go blind. Blindness stopped being abstract and began to feel possible. I began to live with a quiet fear that I try not to acknowledge. I suppose it was because I no longer had my parents to remind me to take my eye drops, and I had to find my own way to the doctor. Then, living with my roommate, something clicked; I do not have the average person’s experience. Typically, I see my Ophthalmologist about every 2-3 months, and we love a good marriage check-in over my eyes.  At some point in my twenties, I was diagnosed with PCOS, another lifelong condition, but this one doesn’t have a standard treatment plan. 

I wish I were younger. I sought out a guide on how to live with multiple conditions, but through trial and error, I created my ideal lifestyle to maintain my health and not allow limitations. People underestimate the mental part of these conditions; they’re not painful or debilitating, but one can take my vision. The other affects my uterus and makes me feel less feminine. PCOS affects my overall health far beyond fertility, but there is another silent fear, well, the what-ifs. There are no days off or a vacation from this reality, and sometimes that sucks! Lying in bed with level ten cramps, but having to remember to take your eye drops; there needs to be a pause for the Glaucoma at least on my bad periods lol! 

Although it has finally hit me like a ton of bricks, that isn’t a trendy topic; this is my life, and I feel free! Because there has never been anything average about me, and my medical history is living proof, beyond that, the lifestyle I live isn’t for most—and that’s exactly the point.