Being a self-advocate involves taking an active role in your medical care. It is an important tool to help be certain you are receiving optimal care. It also may give you a sense of control in times of uncertainty.
Self-advocacy doesn’t have to be daunting or time-consuming- it can be as simple as asking more questions at a doctor’s appointment. Furthermore, being a self-advocate doesn’t mean that you alone are responsible for your care. In fact, it commonly involves seeking additional support from others, including friends, family members, and health care professionals.
Being a self-advocate
Self-advocacy is an ongoing process that begins at diagnosis and continues through your treatment. To get started as a self-advocate, you may want to:
- Ask questions of your doctor and other members of your health care team.
- Learn more about your type of kidney disease from reliable websites, such as NephCure.org, or from your doctor.
- Ask about and take advantage of other services offered at your doctor’s office, hospital, or clinic, such as counseling, patient services, support groups, nutritional counseling, and fitness or movement classes.
- Make connections with other people living with NS, and learn from those who have had similar experiences. Check out NKI’s Peer Support programs and get connected right away!
- Consider seeking a second opinion about your diagnosis or treatment plan, this may help you feel more confident about your choices or lead you in a different direction.
- Don’t be afraid to ask for help managing non-medical issues, such as cost of medication, health insurance, transportation and even childcare. Learn more about how to address psychosocial issues (emotional or social effects of kidney disease).
- Enlist a group of friends and family who are willing to step in and help when you are not feeling your best.
- Keep an organized list of your medical records, tests, labs etc.
Finding additional help
Sometimes, even after taking these steps, you may still have concerns or special circumstances may arise. In such cases:
- Talk with a third party, such as the head nurse or your family doctor. They may be willing to discuss the matter with the doctor or offer helpful suggestions.
- If you are overwhelmed by and have a hard time managing your care, consider looking into Palliative Care. Many people with serious illness need a third party’s help; that is OK and probably best for your overall success in treating your chronic illness.
- If you are having a problem with a doctor or another member of your health care team while in the hospital, speak with a social worker or a hospital patient service representative.
- If your doctor’s communication style does not match yours or you want a different approach for your care, consider finding a new doctor or health care team. Ask for references from friends, family members, and other people with the same type of kidney disease. In addition, call your insurance company to get a list of specialists that are part of your plan’s network. Learn more about choosing a doctor here.