Coping with Chronic Illness and Rare Disease


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A digital representation of a heart shape made of white fingerprint patterns on a black background.

Are you managing a chronic illness or rare disease?

You are not alone.

Therapy for Chronic Illness and Complex Medical Conditions

Living with a chronic illness affects far more than your physical health. The uncertainty of symptoms and health flares, ongoing medical appointments, treatment decisions, and the demands of managing complex care can affect your emotional well-being, relationships, work, identity, and daily life.

For many people, these challenges are compounded by experiences of medical trauma, dismissal, or not feeling heard or believed within the healthcare system. When an illness is invisible to others, it can also be difficult for friends, family members, and colleagues to understand what you are experiencing, contributing to loneliness, isolation, and changes in important relationships.

I specialize in working with individuals and families affected by acute, chronic, rare, and complex medical conditions. Therapy may address:

  • Medical trauma and difficult healthcare experiences

  • Health-related anxiety, depression, and emotional distress

  • Grief, loss, and changes in identity

  • Life transitions and adapting to changes in health

  • Loneliness, isolation, and maintaining social connection

  • Friendships, dating, and long-term relationships

  • Communicating needs and setting boundaries

  • Navigating relationships with healthcare providers

  • Caregiving and changing family dynamics

  • Managing the emotional demands of ongoing medical care

You didn't choose to be sick, but you can choose what to do with it.

Living with chronic illness can be isolating, but you do not have to navigate its emotional and relational impact alone. Therapy can provide a place to process what has happened, develop effective coping strategies, strengthen relationships, and find ways to build a meaningful life alongside illness.

Clinical Expertise Informed by Lived Experience

I have spent more than 18 years specializing in the psychological and relational impact of chronic illness and complex medical conditions, working with patients, care partners, couples, parents, siblings, and families.

My understanding of this work is both professional and personal. My own experience living with chronic illness has informed my understanding of the complexities patients and families can face. My clinical work, however, is grounded in nearly three decades of experience as a psychotherapist and in evidence-based approaches to mental health, trauma, relationships, and emotional regulation.

Individual, Couples, Family, and Group Therapy

Chronic illness does not occur in isolation. It affects relationships with partners, family members, friends, caregivers, and medical providers.

Therapy can help you better understand and communicate your needs, develop coping and emotional regulation strategies, navigate changing roles within relationships, establish boundaries, and strengthen the connections that provide meaningful support.

For individuals experiencing anxiety, depression, trauma-related symptoms, grief, or other mental health concerns alongside chronic illness, treatment can also address these concerns directly through evidence-based psychotherapy, psychoeducation, and practical coping strategies.

The goal is not to minimize the realities of illness or suggest that psychological treatment can eliminate them. It is to help you develop the emotional and relational tools to navigate those realities with greater clarity, flexibility, and support.

Consultation and Professional Education

I provide consultation, education, and professional resources for psychotherapists, psychiatrists, healthcare professionals, patient organizations, and others seeking a deeper understanding of the intersection between chronic illness, medical trauma, relationships, and mental health.

For more than 18 years, I have provided education within the chronic illness and rare disease communities. My work includes more than 40 professional and patient-focused presentations, national speaking engagements, podcasts, published writing, professional education, and research contributions.

I am also the author of More Than a Patient: Building Relationships and Creating a Meaningful Life When You Have a Chronic Illness, which focuses on the psychological and relational impact of chronic illness and provides practical strategies for navigating relationships with friends, partners, caregivers, family members, and healthcare providers.

Please contact me for speaking engagements, professional consultation, collaboration opportunities, or a copy of my CV.

Resources

Resources for Rare Disease and Chronic Disease Patients

Genetic and Rare Diseases
National Health Council
National Organization of Rare Diseases
PanAmerican Health Organization
Patient Advocate Foundation
Patient Services, Inc.
Patients Rising
World Health Organization

Allergies / Asthma / Bronchiectasis / Chronic Sinusitis / Eczema

Allergy & Asthma Network
Altogether Eczema
American Academy of Asthma, Allergy, and Immunology
American College of Asthma, Allergy, and Immunology
American Lung Association
American Thoracic Society
Asthma and Allergy Foundation of America
Asthma Society of Canada
Food Allergy Research & Education
International Alliance of Dermatology Patient Organizations
National Eczema Association
National Institute of Allergy and Infectious Diseases
World Allergy Association

Alopecia

American Hair Loss Association
National Alopecia Areata Foundation

Amyotrophic Lateral Sclerosis / ALS (a.k.a. Lou Gehrig’s Disease)

A Life Story (ALS) Foundation
ALS Society of Canada
Hope Loves Company
Les Turner ALS Foundation
Project ALS
The ALS Association

Autoimmune Illnesses and Connective Tissue Disorders

American Autoimmune & Related Diseases Association
Arthritis Foundation
Arthritis National Research Foundation
International Scleroderma Network
Lupus Canada
Lupus Foundation of America
Lupus Research Alliance
Rheumatoid Arthritis Foundation
Rheumatoid Arthritis Support Network
Scleroderma Foundation
Scleroderma Research Foundation
Sjogren’s Foundation

Back Pain: Degenerative Disk Disease / Spondylosis

Arthritis Foundation
Daily Strength.Org Support Group
International Society for the Advancement of Spine Surgery: The Innovation Society
National Spine Health Foundation
Spondylitis Association of America

Blood Disorders

AA/MDS International Foundation (Aplastic Anemia/Myelodysplastic Syndromes)
American Sickle Cell Anemia Association
Iron Disorders Institute
ITP International Alliance
Platelet Disorder Support Association
The ITP Support Association (UK)
World Federation of Hemophilia

Chronic Pain

International Myopain Society
National Fibromyalgia & Chronic Pain Association
U.S. Pain Foundation

COVID-19 Long Haulers

Washington State Hospital Association Post-COVID Recovery Resources

Cystic Fibrosis

Cystic Fibrosis Canada
Cystic Fibrosis Foundation
Emily’s Entourage
Take A Breather Foundation

Dysautonomia

Dysautonomia International
Dysautonomia Support Network
The Dysautonomia Project

Ehlers Danlos Syndrome

EDS Today
The Ehlers Danlos Society

Endocrine and Metabolic Conditions

American Diabetes Association
American Thyroid Association
Cushing Support and Research Foundation
Hormone Health Network Endocrine Society
Hypoparathyroidism Association, Inc.
Juvenile Diabetes Research Foundation
National Adrenal Diseases Foundation
National Institute of Diabetes and Digestive and Kidney Diseases
Pituitary Network Association

Fibrodysplasia Ossificans Progressiva (FOP)

 International FOP Association

Fibromyalgia

American Fibromyalgia Syndrome Association, Inc.
Daily Strength.Org Online Support Group
European Network of Fibromyalgia Associations
Fibromyalgia Association UK
Fibromyalgia Coalition International
International Myopain Society
National Fibromyalgia & Chronic Pain Association
National Fibromyalgia Association
PANDORA Org (Patient Alliance Neuroendocrineimmune Disorders Organization for Research & Advocacy)

Gastrointestinal Diseases

American Gastroenterological Association
Association of Gastrointestinal Motility Disorders, Inc.
Beyond Celiac
Canadian Celiac Association
Celiac Disease Foundation
Crohn’s & Colitis Foundation
Digestive Disease National Coalition
Gastroparesis Patient Association for Cures and Treatments
Girls With Guts
IBD Support Foundation
IBS Patient Support Group
International Foundation for Functional Gastrointestinal Disorders
National Celiac Association
National Institute of Diabetes and Digestive and Kidney Diseases
SIBO Center (info page)
The Great Bowel Movement
The IBS Network

Heart Disease / Stroke

American Heart Association
American Stroke Association
Children’s Heart Link
Stroke Association (UK)
Stroke Recovery Foundation, Inc.
The Heart Foundation
Women Heart
World Heart Federation

Kidney and Urinary Conditions

American Association of Kidney Patients
American Kidney Fund
National Institute of Diabetes and Digestive and Kidney Diseases
PKD Foundation
PKD International (Global Alliance for Polycystic Kidney Disease)
Renal Support Network
Urology Care Foundation

Lung and Pulmonary Illnesses

American Thoracic Society
British Lung Foundation
European Respiratory Society

Lyme Disease

American Lyme Disease Foundation, Inc.
Global Lyme Alliance
International Lyme and Associated Diseases Society
Liv Lyme Foundation
Lyme Connection
Lyme Disease Association, Inc.
Lyme Disease Foundation
Lyme Disease.Org

Mast Cell and Mastocytosis

Mast Cell Hope
Super T’s Mast Cell Foundation
The Mastocytosis Society, Inc. (The Mast Cell Disease Society, Inc.)

Migraines and Cluster Headaches

American Migraine Foundation
Association of Migraine Disorders
Chronic Migraine Awareness, Inc.
Cluster Headache Support Group
Clusterbusters
Coalition for Headache and Migraine Patients
Danielle Byron Henry Migraine Foundation
International Headache Society
Migraine Disease.org
Migraine World Summit
Migraine.com
Miles for Migraine
National Headache Foundation

Multiple Sclerosis (MS)

Accelerated Cure Project
Multiple Sclerosis Association of America
Multiple Sclerosis International Federation
Multiple Sclerosis News Today
National Multiple Sclerosis Society

Muscular Dystrophy

Muscular Dystrophy Association
Muscular Dystrophy Canada

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society
International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
PANDORA Org (Patient Alliance Neuroendocrineimmune Disorders Organization for Research & Advocacy)

Myasthenia Gravis

Muscular Dystrophy Association
Myasthenia Foundation of America, Inc.
Myasthenia Gravis Association

Parkinson’s Disease

American Parkinson Disease Association
The Michael J. Fox Foundation

Phenylketonuria (PKU)

Children’s PKU Network
National PKU Alliance
National PKU News

Polycystic Ovary Syndrome (PCOS)

American Society for Reproductive Medicine
Hormone Health Network
National Women’s Health Network
PCOS Awareness Association
PCOS Challenge: The National Polycystic Ovary Syndrome Association

Primary Immunodeficiency

European Society for Immunodeficiencies
IG Living
Immune Competence
Immune Deficiency Foundation
International Patient Organization for Primary Immunodeficiencies
Jeffrey Modell Foundation

Psoriasis

National Psoriasis Foundation

Pulmonary Hypertension

Pulmonary Hypertension Association
Pulmonary Vascular Research Institute 

Sleep Disorders

American Sleep Apnea Association
American Thoracic Society

Vascular Disease/Peripheral Artery Disease

American Heart Association
The Vascular Disease Foundation/Vascular Cures

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