Navigating Major Treatment Decisions: Why "Good Enough" Might Not Be Enough

Are you on one or more medications?

If you are asked, "How are things going with your treatment?" on a 1-to-10 scale, do you automatically answer "6"—simply because you’ve been at a "2" before and 6 feels like a win?

Recognizing the "good enough" trap

Being on a cruise-controlled regimen after riding a bumpy road feels safe. When things are rough and your medical condition becomes the sole focus of your daily life, it’s a massive energy sap. Getting even partial relief can give you a misleading sense of wellness. Not feeling terrible doesn’t necessarily mean that you are feeling great, and a long-term strategy of keeping things the same just to avoid rocking the boat has its drawbacks.

If your doctor suggests exploring new management strategies, or if a peer in the rare disease community is experiencing better energy and a higher quality of life on a different routine, it is always worth hearing them out. You don’t have to make an immediate change, but listening with an open mind is a powerful first step in evaluating whether to stay the course or adjust your approach.

Lessons from a lifelong patient

As a lifelong patient, I understand the dilemma. I’ve waited too long to start on some medications, stayed on some longer than I should have, and I’ve also made changes too fast at times, even stopping treatment altogether.

Bad idea. (Especially with a rare blood disorder, where stopping or altering therapy without your hematologist's guidance can lead to dangerous complications!)

Right now? I’m in the sweet spot. Everything prescribed is doing its job, so long as I ignore the skyrocketing cholesterol, which my next round of labs will shed more light on. I’m already wincing at the prospect of even having to consider any changes at this point.

The medical condition I was born with, hemophilia, a rare blood disorder, impacted my childhood dramatically, then lay low well into adulthood. Managing it involves needles and self-infusions, and sticking myself is something I didn’t learn how to do until my late 30s, when I had to.

I wish I’d learned earlier; it would have saved me from having to deal with some painful experiences and symptoms left untreated too long. But I needed those things to happen—they helped me learn that change was not just worth considering. It was essential to my well-being and safety.

We are all on our path, at our own pace.

My transition to self-infusion

The biggest shift in how I managed my health occurred when my care team and I discussed transitioning to a regular, subcutaneous self-infusion routine. The idea of taking control of my own administration at home—dealing with small needles and set-up equipment on my own schedule—was intimidating at first. I felt like a human pin cushion for the first few weeks.

Finding calm in the new routine

Needle-less to say, I was intimidated. Over time, and with patient guidance from my nurses and support from others in the rare disease community, I got the hang of it. I stopped being afraid to ask "stupid" questions. Now, setting up my infusion is just another routine. I even put on my favorite music playlist while I prep my supplies, making it a dedicated moment of calm in my day. It’s fun to see which song plays just as I’m rolling up my sleeve to treat myself.

Reclaiming daily life and quality of living

One thing that helped me make the change was thinking: if it doesn’t work out, I can talk to my doctor and go back to what I was doing or try another path. Something I didn’t anticipate was how much better I felt after beginning a regular, preventive treatment routine—how having consistent treatment positively impacted my daily life. Keeping my blood counts stable and managing chronic fatigue gave me my days back.

I was able to take more walks, do more yoga, be more physically active, all because my body and joints felt so much better. For so long I’d figured that, in my 50s, I’d be in the market for stylish canes, not looking for new bowling shoes.

Partnering with your care team

As you consider your current treatment strategy, vocalize your curiosity with your hematologist. Vocalize your fears, your doubts, and your hopes for what a "10 out of 10" day could actually look like for you.

Wishing you all the best on your journey. I hope this inspires you to talk with your care team and make the healthiest decisions for yourself, to lead the best life possible, because you deserve that.