The Secrets to Navigating Disability That I Humbly Share
We will all encounter disability at some point in our lives, just as we age. No one is immune. For many of my patients with rheumatic illness, this means navigating both physical and mental limitations. And even if disability doesn’t affect us directly, at some point we will either care for someone who lives with a disability—or need care ourselves.
To those living with chronic illness, or to anyone who loves someone struggling with disability—whether it’s rheumatoid arthritis, severe vasculitis, lupus, myositis, or significant mobility limitations from osteoarthritis.
I’d like to humbly share a few lessons I’ve learned not from textbooks, but from life—through 18 years of being a physician (so from listening to my patients’ stories), and through parenting a child with significant support needs.
The oxygen mask analogy cannot be overstated.
You have to take care of yourself first. Find what truly matters to you—what fills your cup, what brings you joy and defines who you are—and protect that fiercely. Sometimes this means getting creative or thinking outside the box. Disability may change how you do things, but it doesn’t mean you have to give them up entirely.
Humans are remarkably resilient. We’re capable of far more than we think. It may require flexibility, accommodations, or accepting help. For example, if you love to travel but have mobility limitations, getting assistance at the airport—even being pushed in a wheelchair—may feel uncomfortable or humbling. But if it allows you to be out in the world, experiencing life, that’s not a loss. That’s a win.
2. Never minimize the small wins.
When health challenges pile up, discouragement comes easily. Shift your focus to what is possible. Celebrate what you can do, no matter how small it seems.
Opening a water bottle.
Falling asleep at a consistent time.
No longer needing prednisone.
Periods of feeling less pain or being pain-free.
Successfully going on an outing.
These are real victories.
Our son recently learned to spread peanut butter on his own sandwich. To someone else, it might seem small. For our family, moments like that matter. Let them anchor you.
3. Protect your headspace.
Your mind is your most valuable asset when navigating chronic illness and disability. If your mindset deteriorates, your body often follows. Do whatever you can—within your means—to stay grounded, supported, and mentally well. This is essential.
Living with chronic illness and disability—especially rheumatic disease—is hard. If you are someone currently in this struggle, I see you.
Don’t try to do it all by yourself. Build a circle of trusted support and know that you are not alone.