Coping with Chronic Illness and Rare Disease
Welcome! This is a safe space.
Are you managing a chronic illness
or rare disease? You are not alone.
An astounding 45% of all Americans are living with one or more chronic health care conditions in the United States, mostly invisible to others.
Living with the uncertainty of health flares and the daily stressors of medical routines and case management can impact daily routines and relationships. Many patients have experienced medical trauma, neglect, and gaslighting. Because many chronic health conditions are invisible or not identifiable to others, you may not get the support you need leading to feelings of loneliness and isolation. My work with acute, chronic, and complex health care conditions include addressing the following areas:
Developmental Life Transitions
Physical and Emotional Isolation
Missed and Decreased Recreational Time
Relationship Stressors and Dating
Support Group Changes
Medical care management and financial burdens
Health related anxiety, depression, PTSD, and medical trauma
Caregiving and family dynamics
You don’t have a choice in your diagnosis, but you do have a choice in how you manage it. I am here to help make the journey easier. The emotional impact of living with a chronic illness can be isolating, but it does not have to be. Peer-reviewed studies have shown that managing your mental health can be just as important as managing your physical health.
I live it and get it both professionally and personally. I have over 18 years of experience treating patients, care partners, siblings, and loved ones who live with or support those living with chronic illness. I not only bring my professional, but personal experience to the therapeutic alliance. I myself live with over 30 chronic health care conditions, so my familiarity is also personal, so, “I get it.”
Individual, Family, Couples, and Group Therapy: Studies have shown the greatest indicator of improved mental and physical health are positive social connections. Living with the emotional burden and stress of chronic illness can impact interpersonal relationships. Therapy can improve your insight, coping strategies, and communication skills to improve your relationships with loved ones, giving you the right kind of support. Peer reviewed studies have shown that living with a chronic health care condition can lead to mental health conditions such as anxiety, depression, medical trauma leading to PTSD, and neurological conditions such as OCD and ADHD. I can address the underlying clinical mental health conditions through psychoeducation and emotional regulation techniques. In addition, you will improve vital coping and communication strategies to improve relationships with loved ones and your medical team. When mental health is more manageable, it provides a greater level of flexibility to navigate the incredibly complicated medical world of chronic illness management.
Consultation and Professional Resources for Professionals: I offer consultation services to psychiatrists, therapists, and other professionals who may not be aware of the intricacies and intersection of chronic illness and mental health. I conducted over 40 lectures, in addition to podcasts articles, professional writing and research contributions in the chronic illness and rare disease space for over 18 years. Understanding medical trauma and mental health is vital to working with individuals with chronic health care conditions and their loved ones. Please free to contact me for my CV for further information. and requests for collaboration.
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)
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
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

