The Mindset Shift of Proactive Care

I was born with a rare, chronic condition that shaped my youth in very dramatic ways. As an infant, my pain threshold expanded significantly. My parents must have been terrified at my screaming, and their failed attempts to bring relief in the days before the diagnosis came breaks my adult-sized heart.

By age three, they were up to speed on why my early life experiences were so different than my big brother’s, who was just two years my elder. Frequent sickness, nosebleeds, lingering health issues, and unexpected bumps, they discovered, could all be treated.

The sooner, the better.

As a kid, I learned to listen to my body, even if it meant having to cut playtime with friends a little short. I wasn’t always great at that part.

The limits of reactive treatment

Proactive, preventative treatment for my condition has been around about as long as I have—roughly five decades. But the fear regarding the safety of medical products in the 1980s kept that option off the table for me. As I got older and focused on more artistic ventures, I had fewer health crises. By my 20s, I thought of my condition as a relic of the past.

That shifted when the bleeding disorder started to cause some serious disruptions in my 30s, leaving me stunned. It’s embarrassing to admit that, but it’s the truth. It felt like being diagnosed all over again.

I was so annoyed, to put it mildly.

I had learned how to treat myself at home instead of going into the clinic for an infusion every time I suffered a flare-up or setback. I got better at handling the new reality on a "need-to-treat" basis, but I never thought I’d consider proactively treating my condition on a regular, preventative schedule.

A push toward preventative care

Fast forward to the spring of 2024. I was having a lunch date with a few of my friends who have hemophilia—people who have all been treating prophylactically for years. As we were saying goodbye, I casually mentioned my clotting factor levels—my baseline protection—to one of my peers.

“Oh, I didn’t know it was that low,” he said, alarmed, adding that he’d be scared to be walking around that “light.”

Then he apologized.

I didn’t mind his honesty. My specialist had been giving me updates on advances in proactive home treatments for years, and I’d lied and told her I’d think about it each time. At my next appointment, I went in with my friend’s words in mind.

I was ready to explore options. To make the biggest change in how I approach living with the condition I’d been born with.

Living preventatively: The freedom of being "already covered"

Finally, at age 49, I was walking around with steady, protective levels on the regular. When I bumped into the coffee table, I paused to assess the damage. But instead of weighing the old “to treat or not to treat, that is the question!” I breathed easy.

I’m already covered.

So, I’d get ice cream out of the fridge instead of my medication.

In public, my head wasn’t on a swivel like it had always been before, constantly watching out for the clumsy masses and their ability to bounce back from physical impacts without spiraling into a crisis. I’d spent a lifetime trying not to pay the tax for the good health of others.

I wasn’t obsessive. It was just a default mode.

It was a mode I was able to dial back a little, then a little more. I’m still aware and careful, physically, but I find my general vibe more relaxed. It’s far more enjoyable with that bandwidth cleared up, which allows me to be more present in my actual experiences of the moment.

In the moment.

My aching joints felt so much better, too, allowing me to take more walks and do more yoga. In my late 40s, I was in the physical prime of my life.

And I didn’t even need a gym membership!

Reclaiming my mental bandwidth

Now, after breaking the 50s threshold last year, I’m even healthier. My outlook and goals for the future have shifted accordingly. I gave up performing music because of the physical hazards, but now I’m gearing up for something new.

Something exciting, artistically and personally.

My specialist told me that other patients on the same preventative routine had reported similar improvements in their quality of life. What I chose to do as a preventative strategy has proactively changed the landscape. When I’m done writing this, I’ll leave this coffee shop and walk up a hill I’d never considered climbing before.

It leads to a beautiful neighborhood on the outskirts of a historic downtown area.

I’ll turn on a dime to change directions if one way looks more visually captivating—or physically challenging. All of this has certainly improved my mental health, too.

A future built on proactive protection

Now, I’ll always be cautious. I’m too old a dog to unlearn that trick.

Just this week, I masterfully swerved to miss a car on a highway that did not see me coming, at all. They’d drifted into my lane, and I saw the fear on their face as they finally noticed me.

After I made the hero swerve, I banged on the steering wheel to release the endorphins and anger. “You moron! You idiot!!!” I yelled at the driver. Then, just to be safe, I pulled an ice pack out of my water bottle Styrofoam cooler and rested my hand on it.

Just in case I’d overdone it with the pounding.

Having normal amounts of clotting factor, and the caution and awareness that my life has provided, allows me to say: I’ve never been safer than I am today. Most people fear aging, but I now look at my next decades with gratitude for my survival, and genuine excitement over prospects that weren’t there so recently.

I'm grateful for my willingness to take a friend’s concern to heart, and for taking a scary step into a new way of living. Ultimately, moving from reactive survival to proactive protection didn't just change my treatment routine—it gave me the freedom to finally thrive.