Living with Osteogenesis Imperfecta (OI), commonly referred to as Brittle Bone Disease, means constantly navigating physical limitations, chronic pain, and the need to rely on others for everyday tasks. As a disabled artist, I’ve come to realize that art and dependence intersect in countless ways—some more challenging than others.
Whether you’ve lived with a disability all your life or suddenly find yourself dependent due to injury or illness, transitioning to a new “normal” can be overwhelming. Here are a few tips I’ve picked up along the way, which might help you cope if you’re in a similar situation.
1. Let Go of Perfection
When you’re used to managing everything on your own, it’s hard to surrender control. But now, your schedule and routines may have to revolve around the availability of others. This shift can be frustrating, but accepting help doesn’t mean losing yourself—it simply means adapting. Remember, perfect is subjective, and in your new reality, “good enough” might be all you need.
2. Practice “Mind Over Matter”
Physical pain can be debilitating, but it can also be more “manageable” when you shift your perspective. Although there are days where no amount of positive thinking can cut through the hurt, trying to maintain an optimistic mindset helps keep the pain from taking over your life. Like many with Brittle Bone Disease, I deal with chronic pain daily. Yet, I’ve learned to push forward by focusing on my goals and reminding myself that I’ve gotten through flare-ups before—and I will again.
3. Appreciate Your Helpers
It’s natural to feel overwhelmed when you depend on others for basic necessities. The people who step in—family members, friends, aides—often care deeply and want to support you, even if their methods occasionally drive you crazy. They might not do things exactly the way you would, but their willingness to help is invaluable. Take a deep breath, and remember they’re in your corner.
4. Don’t Sweat the Small Stuff
Because someone else is cooking your meals or helping you get dressed, the process won’t always align with your old habits. Total dependence means letting go a little bit. Rather than focusing on every missed detail, celebrate that you’re getting the end result you need. The small annoyances won’t matter as much in the bigger picture of your well-being.
5. Seek Solidarity in Dependence
It helps to know you aren’t alone. Chances are there’s someone in your life—or an online community—who understands the challenges of living with a chronic illness or disability. Connecting with them offers both solace and practical advice. Vent when you need to, listen when you can, and lean on each other.
Reclaiming Your Motivation Despite Dependence
Your new “normal” might look drastically different from what you’re used to, but that doesn’t mean your life’s passion or purpose has to end. For me, art remains my refuge: it’s where I find motivation and a sense of identity beyond my physical limitations. Even on the toughest days, creating—even in small ways—reminds me that I’m more than my condition.
You have two choices:
- Option A: Shut down, give up, and let your disability or condition define your life.
- Option B: Embrace your new reality, adapt, and find ways to continue making a difference—both for yourself and those around you.
Trust me, Option B is far more rewarding. From one disabled artist to another, here’s hoping you find the strength and support you need to forge ahead with courage and creativity.