No one knows you and your health better than you. This guide helps you understand how to use your body’s signals to help you find and address any problems as quickly as possible before they become costly and more serious issues.
Patient Story – (The story is true; the patient’s and provider’s names have been changed.)
Jane’s story is a powerful example of a patient who listened to her body and advocated for herself, ultimately saving her own life. In 2017, Jane experienced severe abdominal pain and nausea, which her doctor of nine years repeatedly dismissed as “bad constipation”. Despite being told multiple times that nothing was seriously wrong, Jane persisted in seeking help.
When Jane’s symptoms worsened, she went to the hospital. Even there, she faced dismissal: “The triage nurse and multiple doctors at the hospital also dismissed my symptoms as ‘stress-related’ and told me to go home and take more laxatives,” Jane recounted. However, Jane did not accept the diagnosis. She continued to advocate for herself, insisting that something was seriously wrong. Her persistence paid off when her condition rapidly deteriorated: “It was only many hours later, when my condition deteriorated rapidly and I was close to death, that they rushed me to surgery and finally diagnosed my condition correctly”. Jane was diagnosed with a life-threatening form of bowel obstruction. If she hadn’t advocated for herself and insisted on further investigation, the outcome could have been fatal. Emergency surgery was performed, saving her life by removing a large segment of her bowel.
Jane’s experience highlights the critical importance of patients trusting their own bodies and persistently advocating for themselves when they feel something is seriously wrong, even in the face of medical dismissal. Her self-advocacy quite literally saved her life, as she might not have received life-saving surgery if she had simply accepted the initial diagnoses and gone home.
When you suspect something may be wrong because you don’t feel right, or you are experiencing pain that does not seem to go away, there are several best practices you should follow:
• Document your symptoms: Keep a record of what you’re experiencing including when symptoms started, their severity, and any patterns you notice.
• Trust your instincts: Remember that you know your body best. If you feel something is wrong, it’s important to take your concerns seriously.
• Prepare for medical appointments: Write down your symptoms, concerns, and questions before seeing a healthcare provider. This ensures you don’t forget important information during the visit.
• Be assertive in communicating your concerns: Clearly express your worries to your healthcare provider. Don’t be afraid to voice your concerns if you disagree with a statement or decision.
• Seek a second opinion if necessary: If you’re unsure about a diagnosis or treatment plan, or if you feel your concerns aren’t being adequately addressed, don’t hesitate to seek another professional opinion.
• Keep detailed medical records: Maintain organized documentation of your diagnoses, medications, treatments, and test results. This information can be crucial when seeking further medical attention.
• Research your symptoms and condition: Educate yourself about your health concerns by using reputable sources. This knowledge can help you ask informed questions and better understand your healthcare options.
• Bring support for appointments: Consider having a trusted friend or family member accompany you to medical visits. They can provide emotional support and help remember important details.
• Request information in writing: Ask for written explanations of diagnoses, treatment plans, and next steps. This ensures you have accurate information to refer to later.
• Practice self-compassion: Remember to be kind to yourself during this process. Self-compassion has been shown to positively impact patient satisfaction and overall healthcare experiences.
Understand Your Body
• Document your medical history and family health history.
• Pay close attention to any changes in your body functions, especially pain, unusual symptoms, or noticeable changes in your own behavior or mood.
Educate Yourself
• Learn as much as possible about your condition from reliable sources (see “Reliable Sources of Information” below).
• Thoroughly understand your health insurance coverage. Contact your insurance provider to clarify any questions about your plan’s benefits, copays, deductibles, and covered services.
Make Your Voice Heard
• Communicate clearly and respectfully with your healthcare team.
• Utilize various forms of communication, including speaking, sign language, or assistive technology.
• Pay attention to your body language and maintain eye contact during in-person meetings.
Medical Tests and Screenings
• Purpose of Medical Tests: Tests are used to screen for illnesses before symptoms appear, diagnose existing problems, evaluate the severity of a condition, and monitor the response to treatment. (Source: Paste.txt)
Types of Medical Tests
- Analysis of Body Fluids: Blood, urine, spinal fluid, joint fluid, etc.
- Imaging: X-rays, MRI, PET, CT scans, angiography, and radioisotope scanning.
- Endoscopy: Using a camera to view inside the body.
- Body Function Measurement: E.g., heart’s electrical activity, lung capacity.
- Biopsy: Tissue samples are removed and examined.
- Genetic Testing: Examining cells for chromosome abnormalities.
Common Medical Tests and Screenings Include: (Source: Mayo Clinic, American Heart Association, CDC)
• Blood Pressure: Normal is less than 120/80 mm/Hg.
• Body Mass Index (BMI): Normal range is between 18.5 and 25.
• Complete Blood Count (CBC): Measures red blood cells, white blood cells, hemoglobin, etc.
• Prothrombin Time (PT): Measures how long it takes your blood to clot.
• Cholesterol: The American Heart Association recommends that all adults thirty-five and older have their cholesterol checked every 5 years. Healthy total cholesterol is below two hundred.
• Triglycerides: Optimal levels are less than 100 mg/dL, and levels below 150 mg/Dl are considered normal.
• Colonoscopies: Recommended for anyone older than fifty who has not been screened for colorectal cancer.
• Melanoma: Melanoma is highly curable when detected early.
• Pap Smears: Takes samples of cells from a women’s cervix to look for changes that might indicate the presence of cervical cancer before there are any symptoms.
• Mammography: Usually recommended for women older than fifty, and for younger women with increased risk factors.
• Echocardiography: Uses sound waves to take a moving picture of the heart chambers, valves, and surrounding structures.
• Magnetic Resonance Imaging (MRI): A detailed x-ray, and it lets doctors see pictures of your muscles, nerves, bones, and other organs.
• Computer Axial Tomography (CT or CAT Scan): Detailed pictures inside your body. Its primary uses are to let doctors find blood clots, tumors, infections, and other diseases and conditions.
• Bone Density Study: Measures bone loss.
• Depression: The National Institute of Mental Health estimates that six million men alone are diagnosed with depression every year.
• Free Preventive Care: Many preventive care and screenings are now free under many insurance plans. Check with your health insurance provider to find out what tests and screening they cover at 100%, or no cost to you.
Using Online Symptom Checkers
• Cautionary Note: Online symptom checkers should never replace a diagnosis from a qualified medical professional. (Source: Harvard Medical School Study, 2016)
• Value: Symptom checkers can be useful for gathering information to share with your doctor. However, do not bring in reams of paper and symptom checker information to your doctor. Your doctor will not have the time to review it all. A summary of what you found will do a much job of helping your doctor diagnose the situation.
Reputable Symptom Checkers
- AskMD: https://www.sharecare.com/askmd/get-started
- Drugs.com: https://www.drugs.com/symptom-checker/
- Everyday Health: http://www.everydayhealth.com/symptom-checker
- Mayo Clinic: http://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075
- WebMD: http://symptoms.webmd.com/#introView
Making the Most of Doctor’s Appointments
- Finding a Qualified Healthcare Professional: Start by getting a list of qualified and in-network physicians in your area from your insurance company or, if uninsured, from your State Health Department.
- Scheduling an Appointment
• When you are speaking to someone from the physician’s office, introduce yourself and explain your situation.
• Ask if the practice accepts your insurance.
• Ask about the doctor’s experience treating people with symptoms like yours.
• Ask the person scheduling your appointment what will be done during the appointment. Make sure to ask if any tests or procedures will be done.
• Ask what you need to bring to the appointment.
• Ask what forms you need to complete prior to your appointment, how much time it usually takes to complete the forms, and if there is a website where you can print and/or complete them before you come in for your appointment.
• Ask how much time the doctor or health provider will have to spend with you.
• Ask how much you will have to pay out of your own pocket for the appointment, and any tests that the doctor might want to perform.
• Ask if the doctor will be available to answer any questions you might have after the appointment, and how long it usually takes to get answers.
- Preparing for Your Initial Appointment
• Prepare a list of questions for the doctor before the appointment.
• Be prepared to explain your condition. Consider writing down your symptoms, any recent changes in your condition, and anything that seems out of the ordinary.
Questions to ask yourself about your symptoms include:
– What exactly are my symptoms?
– Are the symptoms constant, or how often do I experience them?
– Does anything I do make the symptoms better or worse?
– Do the symptoms affect my daily activities, which ones, and how?
• If possible, ask the doctor’s office to send you any forms that they need filled out, and complete them before arriving for the scheduled appointment. You may also be able to do this on the practice website.
• Make a list of the prescription and over-the-counter drugs, supplements, and vitamins. If you do not make a list, bring the medicines with you to your appointment.
• Make a list of your concerns.
• Take the information with you when you meet with your doctor.
• Make sure you can see and hear as well as possible.
Speaking Up in Hospitals and Nursing Homes
• Address concerns immediately with your doctor, nurse, or unit manager.
• Clearly state the problem and what you expect to be done to resolve it.
• If you do not receive a timely response, contact the hospital’s customer service, patient advocacy, or patient safety/quality department.
Preparing a Hospital Kit (Adapted from Hassans Hopkins Medicine). Before heading to the hospital or treatment facility, assemble a kit containing:
- Your medical information (conditions, history, etc.)
- Medication list (names, dosages, frequency)
- Allergies
- Contact information for your physicians.
- Insurance information
- Contact information for a designated person to speak on your behalf, if needed.
Additional Tips for Hospital Stays (Adapted from Johns Hopkins Medicine)
• Bring someone to help advocate for you.
• Ask questions about medications, tests, procedures, and the doctors you will see.
• Follow your doctor’s instructions to start moving as soon as possible.
• Encourage visitors to wash their hands or use hand sanitizer to prevent infections.
• Discuss discharge and care coordination plans before leaving the hospital. Request a copy of your discharge summary for yourself and your primary care physician.
Free Help and Resources
• Patient Advocate Foundation: (http://www.patientadvocate.org/ or 800-532-5274) Offers free case management services.
• BenefitsCheckUp: (www.benefitscheckup.org) Helps find free programs and services.
Free Helplines for Specific Diseases and Illnesses
(Phone numbers may change. Always verify the number before calling.)
• Advanced Biotech Therapies: 855-845-3663
• AIDS: 877-296-9264
• American Cancer Society: 800-227-2345
• American Kidney Fund: 800-638-8299
• BenefitsCheckUp: 202-479-1200
• Blood & Marrow Transplant Info. Network: 888-597-7674
• Breast Cancer: 800-977-4121
• Breast Cancer Assistance Foundation: 410-825-9388
• Breast Cancer; Susan G Komen: 800-808-7866
• CancerCare: 800-813-4673
• Cancer Hope Network: 800-552-4366
• Cancer Research: 800-843-8114
• Childhood Cancer: 855-858-2226
• Childhood Cancer; St. Jude Children’s Hospital: 866-278-5833
• Childhood Illnesses: 877-242-4543
• Chronic Disease Fund: 877-968-7233
• Chronic Illnesses: 888-267-1440
• Colon Cancer Alliance: 877-422-2030
• Kidney Failure: 800-891-5390
• Leukemia & Lymphoma Society: 800-955-4572
• LIVESTRONG Foundation: 855-220-7777
• Long Term Care: 202-357-3555
• Lung Cancer Alliance: 800-298-2436
• Medicare Advocacy: 800-456-7790
• Medicare Rights: 800-333-4114
• Mental Illness: 800-950-6264
• Myeloma Foundation: 800-452-2873
• National Bone Marrow Transplant Link: 800-546-5268
• National Cancer Institute: 800-422-6237
• National Center for Complimentary & Alternative Medicine: 888-644-6226
• National Domestic Violence: 800-799-7233
• National Eye Institute: 301-496-5248
• National Kidney Foundation: 855-653-2273
• National Mental Health & Substance Abuse: 800-662-4357
• National Patient Travel: 800-296-1217
• National Patient Travel, (Stroke & Neurological Disorders): 800-296-1217
• National Sexual Assault: 800-656-4673
• National Stroke Association: 800-787-6537
• National Suicide Prevention: 800-273-8255
• Ovarian Cancer: 800-682-7426
• Pancreatic Cancer: 877-272-6226
• Patient Access network Foundation: 866-316-7263
• Patient Advocate Foundation: 800-532-5274
• Prescription Drugs: 800-503-6897
• Prescription Drugs: 877-267-0517
• Prostate Cancer: 800-808-7866
• Psoriasis: 800-723-9166
• Rare Disorders: 203-744-0100
• Veterans Crisis Line: 800-272-8255 (Press #1)
Patient Advocacy Organizations
• Consumers Advancing Patient Safety: http://patientsafety.org/
• Empowered Patient Coalition: http://empoweredpatientcoalition.org/
• Hospice Patients Alliance: http://hospicepatients.org/
• Medically Induced Trauma Support Services: http://www.mitss.org/
• National Family Caregivers Association: http://caregiveraction.org/
• Patient Advocate Foundation: http://www.patientadvocate.org/
Rights for Patients with Disabilities
Under the Americans with Disabilities Act (ADA) and Guide 504 of the Rehabilitation Act of 1973, individuals with disabilities have the right to accessible healthcare services. Healthcare providers must ensure equivalent access to services for people with disabilities.
Resources for People with Disabilities
• American Foundation for the Blind: Disability Rights Resources for People with Vision Loss: http://www.afb.org/info/programs-and-services/public-policy-center/disability-rights-resources/125
• Americans with Disabilities Act: https://www.ada.gov/
• Advocating Change Together: http://www.selfadvocacy.org/index.htm
Additional Tips for Self-Advocacy
• Understand your health insurance.
• Prepare questions for your doctor(s) and healthcare providers.
• Maintain your own medical records.
• Review your medical bills for errors.
• Know when to ask for a second opinion.
Reliable Sources of Information
• Your Doctors and Healthcare Team: They are your primary source of information regarding your specific condition and treatment options.
• Internet Health Portals:
• National Institutes of Health (NIH): https://www.nih.gov/
• Centers for Disease Control and Prevention (CDC): https://www.cdc.gov/
• Mayo Clinic: https://www.mayoclinic.org/
• Professional Medical Associations: Organizations like the American Medical Association (AMA) or specialty-specific associations (e.g., American Heart Association) often provide patient-friendly information.
Key Takeaways
• Pay Attention to Early Warning Signs: Pain and changes in your body’s normal functions are important signals to pay attention too.
• Early Detection Matters: Identifying problems early can lead to less invasive, lower-cost treatments, and significantly improve your chances of a longer, healthier life. Survival rates for most major illnesses increase dramatically when a problem is found early and localized.
• Consider Lifestyle Factors: Think about recent changes in your routine that might be causing your body to react. Try correcting the problem yourself by adjusting your diet, habits, or exercise.
• adjusting your diet, habits, or exercise.
Dr. You 
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