Mental Health Wellness Resource
Having a chronic illness and the process of treatment can produce feelings that affect mood and behavior. Frustration, sadness, and worries for the future are common. You may also experience mood changes, changes in sleep patterns, crankiness, anger, social withdrawal, changes in appetite, or trouble concentrating.
We recommend that you speak with your family members and healthcare team about how you’re feeling. Below we also list additional resources that you may find helpful, including community organizations, support groups, therapists, or other programs that can help you or your child cope with these feelings.
If you or your family member is experiencing a crisis and needs urgent care, please call 911 and/or seek out emergency services.
988 Suicide & Crisis Lifeline (https://988lifeline.org) can be reached at 988 or 800-273-8255 (or 866-628-9454 in Spanish).
Crisis Text Line (https://www.crisistextline.org): Text HOME to 741741 to reach a counselor.
The Trevor Project (https://www.thetrevorproject.org) is a crisis intervention and suicide prevention hotline for LGBTQ youth that can be reached at 866-488-7386. You can also text START to 678678 for support.
You can call 211 or access https://211.org which can connect you to mental health resources in your area.
If you are considering therapy, it is advantageous to call your doctor’s office for a referral. Your insurance company can also provide you with a list of providers covered by your plan. Call your child’s school to ask whether they have any behavioral health clinicians on staff, or behavioral health agencies with whom they partner.
You may also be able to find therapists online through any of the following resources:
Alma (https://helloalma.com) provides a network of clinicians in private practices.
GoodTherapy (https://goodtherapy.org) is online directory for searching for a therapist.
Innopsych (https://innopsych.com) is an online resource for finding therapists of color.
Mental Health Match (https://mentalhealthmatch.com) is a national network of therapists in private practices.
Psychology Today (https://psychologytoday.com) has an online database for finding a therapist.
Many non-profit organizations have numerous resources and support which may be helpful.
The Lupus Foundation of America: https://www.lupus.org. The contact number is (202) 349-1155
The Arthritis Foundation: https://www.arthritis.org. The contact number is 800-283-7800. The direct link to Juvenile Arthritis is https://www.arthritis.org/juvenile-arthritis.
Cure JM is the leading funder of JM care and research. Information and resources can be found at https://www.curejm.org/
Systemic JIA Foundation https://www.systemicjia.org/patient-resources It also provides resources and offers a Facebook support group for parents and caregivers at www.facebook.com/groups/SJIAPARENTS.
Autoinflammatory Alliance at http://autoinflammatory.org. The Autoinflammatory Alliance is dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases. The alliance offers a Facebook support group at https://www.facebook.com/groups/nomidalliance.
Systemic Autoinflammatory Disease (SAID) Support at http://saidsupport.org.
CRMO awareness at http://crmoawareness.org. Kaila’s Komfort, Inc. was created to provide comfort to children and adults diagnosed with CRMO.
Generation Patient at https://generationpatient.org/virtual-meetings. Their mission is to connect and empower young adults with chronic and rare conditions through events, meetings, and programs.
Parent to Parent (https://p2pusa.org) is a national network of parent-to-parent programs to ensure access to emotional support for families of individuals with special health care needs.
Cognitive behavioral Therapy (CBT) is an evidenced based approach to anxiety, depression, and pain management. Some freely available CBT resources can be found at:
Living CBT at https://www.livingcbt.com/index.html
Think CBT at https://thinkcbt.com/think-cbt-worksheets