Every day, people with chronic illnesses are in pain. Unfortunately, too often they are afraid to speak up and advocate for themselves because of the history of stigma against individuals with chronic illness and misunderstandings in our society about limitations caused by pain. It’s time we change this. Each person with a chronic illness must choose not only to stay healthy, but also to be their own best advocate at all times.

The world we live in is confusing and challenging. Chronic illnesses such as long COVID, arthritis, diabetes, lupus, asthma and cancer isn’t always easy. It can be isolating, overwhelming, and painful. It’s important to know how to ask for the right accommodations at school, work and in public places to help you lead more fulfilled lives. If you have a chronic illness it’s important to take be your best advocate.

Being the best advocate means identifying your needs, capabilities and priorities. Then knowing how to communicate those in a clear way that is easy for others understand your needs and act upon them. When you have a chronic illness, it can be hard to advocate for yourself. You’re so busy dealing with symptoms, forcing yourself out of bed, trying to ease the pain and being worried about paying for medicines that you may not have the energy or the time to think about how to navigate the healthcare and education systems so you can get the best care possible.

It’s important to be aware of the resources available to you. Each person deals with their illness in their own way and some people are more aware of what resources are available than others. You should always ask your doctor if there is any information that can be shared with you that might be helpful. There is no cure for chronic illness. But there are things you can do to manage the symptoms and improve your quality of life. 

Tips to advocate for yourself

Learn more
Learning more about chronic illness can be empowering. Learning what you can about your illness will help you determine the best options for treatment, support groups and financial support. Your knowledge may also help others understand how serious your condition is and help you.

Find doctors who will collaborate with you
Collaboration is an important piece to help you manage the day-to-day complexities of your conditions.

Get emotional support
Having a good support system of people that you like, respect and trust can have a positive impact on your overall mental health, especially for women, older adults and students. Your support system can include family members, friends, teachers, faith leaders, neighbors or peers. When choosing your support system, make sure the individuals have your best interest in mind.

Chronic illness and work

The reality of working while living with a chronic illness is that it can be really hard on you and your family. But there are some things you can do to improve the work experience.

  • Be proactive and take steps to manage your symptoms.  
  • If you work in an office, ask for a flexible work schedule where you can work from home 1 to 2 days a week.
  • Identify the areas in which you excel and focus on those.
  • Create new friends
    • Meet as many people as you can. This will be helpful if you need to leave your job. The key is to truly make friends who will be supportive and help you.
  • Create an exit plan.
    • If you have a job where you must be on your feet for several hours a day, slowly start learning a new skill so you can transition to a different role or a new job

Chronic illness and college life

If you are a college student with a chronic illness, consider the following:

  • Understand how your lifelong illness may impact you as a student
    • If you have trouble getting to class on time, accommodations can be made. Ask your doctor to send a note listing your limitations and how it will affect your ability to move fast and get to class on time.
    • If you have frequent doctor appointments that interfere with attendance, may arrangements to homeschool on those days
  • Learn how to approach your teachers about accommodations
  • Learn to navigate common scenarios
  • Talk with others with your same condition
    • Be proactive and learn from others who have successfully manage their illness.
  • Seek out a variety of resources for yourself in school
  • You have the right to receive accommodations when you have a chronic illness

Being your own advocate is not about trying to change other people’s views of you or your illness. It’s about acknowledging that you can be competent, trustworthy, and happy in your own skin.