A How-To Guide for Self-Advocacy

After the initial shock of a chronic or terminal illness diagnosis, questions arise. What does this mean? How do I manage the symptoms? Can I afford my treatments and appointments? It feels overwhelming. Learning to advocate for yourself is vital. Self-advocacy ensures you get the answers and care you need.

Preparing for doctor visits

Advocating for yourself means preparing ahead of time for your appointments. Plan ahead to make the best use of your time with the doctor.^1-3

• Write down specific questions – terms you do not understand, treatments you are curious about, or anything you want to discuss!
• List any symptoms you want to go over.
• Ask a loved one for input. They see things you do not.
• Recruit a loved one to attend the appointment with you. Having multiple ears to listen and recording details are helpful.

Attending doctor visits

Go to your appointment prepared to speak up! When facing the lab coat or diplomas on the wall, it can feel intimidating. Always remember you are the expert at living in your body. No one else knows what it feels like. Your doctor cannot address your concerns or symptoms if you do not speak up. The doctor’s office is often where self-advocacy begins.^1-3

• Ask your questions.
• Have the doctor repeat something if you miss it or need help understanding.
• Be clear on how to reach your doctor if you have questions before the next appointment.
• Request your visit summary to go over again later.
• Confirm any tests, lab work, prescriptions, and follow-ups you need before leaving.

A second opinion

Sometimes your first doctor or specialist is not the right match for you. No one doctor is the best fit for each person. You always have the right to look for a new doctor if you are unhappy. It may be time for a second opinion if your doctor:^1,2

• Does not listen to your concerns.
• Is unresponsive to messages.
• Employs medical gaslighting.
• Is not helping you achieve the best quality of life possible.

To find a new doctor:

• Ask others in your area who navigate the same chronic illness for recommendations.
• Check doctor reviews online.
• Ask different clinics about new patient wait times.

Long waits for an initial appointment can be frustrating. They may also indicate a good provider!

Advocating with insurance companies

Navigating insurance with chronic illness is challenging. Being uninsured or underinsured creates barriers to care. It adds stress for how to afford treatments. Treatment and procedure denials occur even with insurance. Insurance advocacy takes time and patience.¹

• Understand your policy. Know your copays for doctor visits, lab work, and drugs.
• Be sure your doctor and any specialists are in your insurance network.
• Before agreeing to a new drug, check insurance coverage. If your plan does not cover the drug, see if there are similar alternatives.
• If insurance denies a drug you need, work with your doctor to file an appeal.
• Contact the pharmaceutical company to see if they offer assistance.

Advocating at work

Your chronic illness can take up a lot of time. Multiple appointments, tests, lab visits, and the exhaustion your body experiences add up. Chronic illness flares can mean more days calling out of work. Advocating for yourself requires you first to identify your needs:^1,2

• Do you need workplace accommodations?
• Can you secure the Family and Medical Leave Act (FMLA) to protect your job if you run out of sick time?
• Will certain symptoms (brain fog, fatigue) make tasks dangerous?
• Can you work remotely a few days a week?

Then decide who you should inform and how much you want to share. How much you share may depend on what you need to request. You may choose to discuss your diagnosis with the following:

• Your supervisor
• Human Resources
• A few trusted colleagues

Every situation is unique. Only you can decide what is appropriate for you.

Applying for disability

In the journey with chronic illness, sometimes it becomes necessary to leave the workforce. Applying for social security disability benefits can fill some wage-loss gaps. It is often a lengthy process. You must gather medical records, secure doctor support, fill out paperwork, and plan for an appeal. Regularly follow up with your disability officer. Make sure the process is moving forward.¹

Self-advocacy comes into play in many ways with chronic illness. Gaining confidence in one area transforms your ability to always advocate for yourself.