WASHAA Webinar Series Insider Tips for Navigating Chronic Illness

Transcription

1 WASHAA Webinar Series Insider Tips for Navigating Chronic Illness October 12, 2017 Allison Fine, MSW, LICSW Founder and Executive Director

2 Living with Chronic Illness: A Case Study Sally is a 40 year old woman with chronic fatigue syndrome (CFS). She eats a healthy diet and exercises when she is able. Sally struggles with fatigue and has difficulty sleeping through the night. She can't get through the workday and has recently gone down to part-time. Sally longs for the days before she was sick. She feels no one understands what she's going through. No disease modifying treatments are available for CFS at this time, and Sally worries what will happen if her CFS worsens.

3 Living with Chronic Illness: The Numbers 117 million people were living with at least one chronic illness as of million adults live with arthritis, the most common cause of disability 27% of invisible illness sufferers see more than 10 doctors before they are diagnosed 7 out of 10 deaths are caused by chronic disease or complications of chronic disease

4 Living with Chronic Illness: Overview No known cause or cure Can be diagnosed at any age Autoimmune, hereditary Flare-ups / Exacerbations or remissions Treatment options Visible vs. invisible Cultural differences

5 Living with Chronic Illness: Myths They have control over how they feel If someone would just take supplement, rest more, exercise more, pray more, etc... They are sick all the time They shouldn't be having fun or good days Only geriatric patients live with health challenges Chronic illness is hopeless, and there's nothing I can do about it

6 Living with Chronic Illness: Physical Symptoms

7 Living with Chronic Illness: Cognitive and Affective Symptoms

8 Coping with Chronic Illness: A Case Study Michael is a 75 year old man living with Parkinson's disease. He was diagnosed just a year ago, but has had symptoms for a few years, including a tremor in his right hand. Michael lives with his wife, Esther in their retirement community. She worries he has been withdrawing from his favorite activities recently and has been snapping at her for no reason. Michael's best friend also died last year after a battle with cancer.

9 Coping with Chronic Illness: Grief and Loss

10

11 Coping with Chronic Illness: Depression Sadness, loneliness, anger, irritability, loss of interest in daily activities, apathy, sleep changes, appetite changes, loss of energy, negative thinking patterns, self-loathing, difficulty concentrating or focusing, hopelessness, reckless behavior, suicidal thoughts/actions A common symptom of many chronic illnesses Risk factors history or family history of depression, history of alcohol or drug use

12 Coping with Chronic Illness: Anxiety Worried Afraid Restless Tense Sweating Heavy breathing or Increased heart rate GI trouble Fear and worry over what's happened or what's to come Types of worries (Medical, Financial, Social) May be part of the diagnosis or a reaction

13 Coping with Chronic Illness: Stress and Other Environmental Factors Stress Financial concerns Pre-existing medical or psychological concerns Strained relationships Poor self-care Lack of support

14 Managing Chronic Illness: A Case Study Margo is a 50 year old woman living with Crohn's disease. Margo had a bowel resection four years ago and takes medication regularly. She has days where she feels great and other days when she doesn't. Margo works and volunteers at her children's school. She swims at the community center pool twice per week, and manages her diet and sleep habits. She enjoys spending time with her husband and two children.

15 Managing Chronic Illness: Western Medicine Medical Professionals: Primary Care vs. Specialists, Nurses, Psychologists, Social Workers, PT, OT, & ST Treatments: medications for symptom management and/or disease modifying therapies Surgery

16 Managing Chronic Illness: Alternative Medicine National Center for Complementary and Alternative Medicine (NCCAM) divides into Whole Medical Systems, Mind Body Medicine, Biologically Based Practices, Manipulative and Body Based Practices, and Energy Medicine

17 Managing Chronic Illness: Self-care strategies ADLs Practice selfcompassion, mindfulness, meditation Exercise Eat a healthy diet Practice good sleep hygiene Adjust expectations Set boundaries Avoid toxic people Spend time with loved ones Change your scenery Be careful where you get your information Journal Be creative

18 Managing Chronic Illness: Support Family Friends Coworkers / Colleagues Counselors / Therapists Support Groups (Self-led vs. Professionally-led) Crisis Clinic (Crisis Line and 211 Community Resources)

19

20

21 Managing Chronic Illness: Resources Chronic Illness Organizations (Center for Chronic Illness, NMSS, ALS Association, Crohn's and Colitis Foundation, etc.) Advocacy Organizations (i.e. WASHAA, Northwest ADA Center) Chronic Illness Tools (WATAP, Sight Connection) Medication assistance programs (NeedyMeds, Pharmaceutical companies, etc.) Community Centers (Senior Services, YMCA/YWCA, neighborhood centers)

22 Center for Chronic Illness (CCI) Founded in 2016 Staff, board, volunteers Free! Professionally-led support groups Educational talks and other events Future programs

23 Center for Chronic Illness Support Groups Living with Chronic Illness Living Mindfully with Chronic Illness Caring for Chronic Illness Living with Rare Chronic Illness

24 Resources Center for Chronic Illness - Cancer Lifeline The Mighty PatientWorthy Global Genes NORD Some1LikeYou - Washington Assistive Technology Act Program Sight Connection - Center for Mindful Self-Compassion UC San Diego Center for Mindfulness - Pharmaceutical Assistance Programs - Partnership for Prescription Assistance - NeedyMeds - Rx Assist - Centers for Disease Control and Prevention - Partnership to Fight Chronic Disease - heet_81009.pdf

25 Questions & Answers

26 Thank You! We welcome your feedback! You will be redirected to a brief survey after the webinar. Questions? Comments? Contact WASHAA at info@washaa.org Allison Fine, MSW, LICSW, Founder & Executive Director, info@thecenterforchronicillness.org (425)