Living with chronic illness can feel overwhelming at times.
There are appointments to attend, medications to manage, symptoms to navigate, and emotions to process. The journey can be exhausting, confusing, and at times, isolating.
But you do not have to walk this path alone.
Whether you are newly diagnosed, have been living with chronic illness for years, care for someone who is ill, or are simply seeking information, I hope the resources shared here provide education, encouragement, and support.
Please remember that while these organizations and resources may offer valuable information, they should never replace the guidance of your healthcare team.
My hope is that this page serves as a starting point—a place where knowledge is empowering, community fosters healing, and support can be life-changing.
💜 Advocacy & Support Organizations
Crohn’s Disease & Inflammatory Bowel Disease
Crohn’s & Colitis Foundation of America
The leading nonprofit organization dedicated to improving the quality of life of people living with Crohn’s Disease and Ulcerative Colitis through research, education, support, and advocacy.
🔗 https://www.crohnscolitisfoundation.org
Girls With Guts
Empowering women living with Crohn’s Disease, Ulcerative Colitis, ostomies, and digestive diseases through education, connection, and support.
🔗 https://www.girlswithguts.org
Myasthenia Gravis
Myasthenia Gravis Foundation of America (MGFA)
Dedicated to improving the lives of individuals affected by Myasthenia Gravis through education, support, advocacy, and research.
Chronic Illness & Invisible Disabilities
Global Healthy Living Foundation
Focused on improving the lives of people living with chronic illnesses through patient empowerment and advocacy.
Invisible Disabilities Association (IDA)
Dedicated to educating, connecting, and encouraging people living with invisible disabilities while increasing public awareness and understanding.
🔗 https://invisibledisabilities.org
Rare Disease & Autoimmune Resources
Autoimmune Association
Leading the fight against autoimmune disease through advocacy, awareness, education, and research.
National Organization for Rare Disorders (NORD)
Supporting individuals and families affected by rare diseases through education, advocacy, and patient resources.
💵 Financial Assistance Programs
Managing a chronic illness can be emotionally, physically, and financially challenging. These organizations may help ease some of the financial burden.
Patient Advocate Foundation
Case management, insurance navigation, and financial aid programs.
🔗 https://www.patientadvocate.org
HealthWell Foundation
Financial assistance for medications, insurance premiums, and treatment-related expenses.
🔗 https://www.healthwellfoundation.org
PAN Foundation
Provides financial support for treatment and medication costs.
🔗 https://www.panfoundation.org
NeedyMeds
Medication discounts and healthcare assistance resources.
💊 Medication Assistance Programs
RxAssist
Information on pharmaceutical company patient assistance programs.
RxHope
Helps patients access prescription assistance programs.
GoodRx
Prescription discount programs and medication price comparisons.
Partnership for Prescription Assistance
Connects patients to programs that may reduce medication costs.
💼 Disability & Workplace Resources
Job Accommodation Network (JAN)
Free guidance on workplace accommodations and disability rights.
Social Security Administration (SSA)
Information regarding Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
Disability Rights Education & Defense Fund (DREDF)
Disability rights education and advocacy resources.
Americans with Disabilities Act (ADA)
Information regarding workplace protections and reasonable accommodations.
💪 Patient Empowerment & Self-Advocacy
You are the expert on your own body.
💜 Ask questions.
💜 Keep copies of your medical records.
💜 Bring a support person to appointments when possible.
💜 Seek second opinions when necessary.
💜 Trust yourself when something doesn’t feel right.
💜 Never be afraid to speak up.
Your voice matters.
🧠 Mental Health & Emotional Wellness
Living with chronic illness affects more than the body.
It can also impact emotional, mental, and social well-being.
National Alliance on Mental Illness (NAMI)
Mental Health America
Psychology Today
🔗 https://www.psychologytoday.com
The Mighty
😴 Sleep & Breathing Resources
American Sleep Apnea Association
Sleep Education
Apnea Board
🌸 Women’s Health & Menopause Resources
The Menopause Society
Office on Women’s Health
🔗 https://www.womenshealth.gov
HealthyWomen
🔗 https://www.healthywomen.org
🌿 Wellness & Self-Care
Healing does not always mean cure.
Sometimes healing means learning how to care for ourselves in new ways.
Remember:
💜 Prioritize rest.
💜 Practice self-compassion.
💜 Move your body as you are able.
💜 Protect your peace.
💜 Celebrate small victories.
🤝 Caregiver Support Resources
Caregivers need support too.
Family Caregiver Alliance
Caregiver Action Network
🔗 https://www.caregiveraction.org
AARP Family Caregiving
🔗 https://www.aarp.org/caregiving
📚 Books & Recommended Reading
Chronic Illness & Resilience
📚 How to Be Sick — Toni Bernhard
📚 The Invisible Kingdom — Meghan O’Rourke
📚 When the Body Says No — Gabor Maté
Crohn’s Disease & IBD
📚 What Doesn’t Kill You — Tessa Miller
📚 Crohn’s and Colitis for Dummies — Tauseef Ali, MD
Caregiving & Emotional Wellness
📚 The Caregiver’s Survival Handbook — Alexis Abramson
📚 Option B — Sheryl Sandberg & Adam Grant
🎙️ Podcasts & YouTube Channels
Chronic Illness & Autoimmune Disease
🎙️ The Autoimmune Hour
🔗 https://understandingautoimmune.com
🎙️ Invisible Not Broken
🔗 https://invisiblenotbroken.com
Crohn’s Disease & IBD
🎙️ About IBD Podcast
Myasthenia Gravis
🎙️ MGFA Podcasts
🎥 MGFA YouTube Channel
🔗 https://www.youtube.com/@MyastheniaGravisFoundation
💬 Share Your Story & Get Involved
One of the most powerful ways we create change is by sharing our stories.
The Mighty
Rare Patient Voice
🔗 https://rarepatientvoice.com
PatientsLikeMe
🔗 https://www.patientslikeme.com
🆘 Emergency Resources & Crisis Support
If you are experiencing a mental health crisis or need immediate support, please reach out.
988 Suicide & Crisis Lifeline
Call or Text: 988
Crisis Text Line
Text HOME to 741741
🔗 https://www.crisistextline.org
SAMHSA National Helpline
1-800-662-HELP (4357)
National Alliance on Mental Illness (NAMI)
🌿 A Final Thought
Healing does not always mean cure.
Sometimes healing looks like acceptance.
Sometimes it looks like adaptation.
Sometimes it looks like finding hope in the midst of uncertainty.
And sometimes healing simply means making it through another day.
Wherever you are on your journey, I hope you find the support, encouragement, and resources you need here.
Most importantly, I hope you remember this:
There is hope.
Help is available.
And you are never alone on this journey. 💜