First, it's clear how much you care about her — the fact that you're asking this question says everything. Supporting someone with RA who has difficulty communicating their pain is genuinely one of the hardest caregiving challenges there is.
Since she has difficulty expressing pain verbally, a visual pain scale can be a Show Full Answer
First, it's clear how much you care about her — the fact that you're asking this question says everything. Supporting someone with RA who has difficulty communicating their pain is genuinely one of the hardest caregiving challenges there is.
Since she has difficulty expressing pain verbally, a visual pain scale can be a game-changer. These use faces or colors instead of numbers or words, making it easier for her to point to how she's feeling without needing to explain it.
Some other communication tools worth exploring:
- Picture boards or cards showing body parts so she can point to where it hurts
- A simple color-coded system — since she loves coloring, this could feel natural to her (e.g., red = bad pain, yellow = some pain, green = okay)
- A yes/no card for quick check-ins during activities like therapy For therapy resistance, an occupational therapist (OT) experienced with sensory sensitivities could be invaluable. They can adapt hand exercises to feel less intrusive and work within her comfort zone — especially important given her sensitivity to touch around her thumbs.
Some approaches that may help with therapy:
- Incorporating coloring itself as therapy — holding different tools, varying grip styles, and using adaptive coloring tools can gently exercise the hands in a way that feels purposeful and enjoyable to her
- Adaptive tools like wide-grip pens, ergonomic scissors, or finger splints that support joints without restricting what she loves doing
- Short, predictable sessions with clear visual cues about start and end times can reduce anxiety around therapy Since her RA levels were severely high, her rheumatologist will likely focus on getting inflammation under control with medication, which can itself reduce pain and potentially slow further joint changes — that's a meaningful step forward even when therapy is difficult.
It's also worth asking the rheumatologist for a referral to a pain specialist or OT who has experience with patients who have communication differences. Bringing her care team together to align on her unique needs can make a real difference.
You're already doing so much right — trusting her when she says it hurts, not pushing, and advocating fiercely for her diagnosis. That matters more than you know.
July 5
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