Living with Juvenile Myositis means becoming an expert in change. Cure JM parents and caregivers learn to track labs, watch for weakness, manage medications, and anticipate flares. We know when something is off physically.
What can be harder to notice, but just as important, are the emotional shifts that happen over time in our children, siblings, and ourselves.
The organization Give an Hour identifies Five Signs that someone may be experiencing emotional distress. These signs are not a diagnosis, and they don’t automatically mean a crisis is happening. They are signals; signs to pause, check in, and offer support.
Here’s how The Five Signs can show up in Cure JM families:
1. Personality Change
A once easygoing child may become more irritable, tearful, or withdrawn. Teens may seem distant or angry. Caregivers may notice they feel emotionally numb, short-tempered, or unlike themselves. Chronic illness can change how stress lives in the body.
2. Agitation
Ongoing medical uncertainty can leave nervous systems on high alert. Trouble sleeping, restlessness, frequent frustration, or emotional outbursts may be signs that stress is overflowing. For caregivers, this can feel like never being able to fully relax, even during calm moments.
3. Withdrawal
Pulling away from people and/or activities that once brought joy, not because of a flare or medical treatment. But because you no longer have the desire to participate. Withdrawal doesn’t always look like sadness; often it looks like exhaustion, avoidance, or isolation.
4. Poor Self-Care
Missed meals, disrupted sleep, ignoring one’s own health, or abandoning routines can be warning signs. Caregivers are particularly at risk, often prioritizing their child’s needs while quietly depleting themselves.
5. Hopelessness
Comments like “This will never end,” “I’m so tired of fighting,” or “What’s the point?” deserve compassionate attention. Hopelessness is not weakness. It’s a reflection of the weight of long-term illness and relentless responsibility.
What to Do When You Notice These Signs
You don’t need to have all the answers. You just need to stay connected.
- Gently name what you’re noticing
- Ask open, non-judgmental questions
- Listen without rushing to fix
- Reach out for support for your child and for yourself
Support is always available.
Living with JM can feel overwhelming at times, and no one has to carry that weight alone. If you or someone you love ever needs additional support, confidential help is available:
• Crisis Text Line – Text HOME to 741741 to connect with a trained counselor
• 988 Suicide & Crisis Lifeline – Call or text 988, or chat at 988lifeline.org
These resources are available not only during emergencies, but also during moments of stress, sadness, or when someone simply needs to talk.
Cure JM families are strong, and support is part of how we keep going. Paying attention to emotional health is another way we care deeply for our children, our families, and ourselves. 💙
by Ronda Thorington, MA, LPC
January 2026
