The Importance of Self Advocacy for Young Adults with Chronic Conditions
As a young adult living with a chronic disease, I’ve learned that developing the ability to speak up for my needs in the medical setting is an invaluable skill. Whether preparing for the next visit to the doctor or getting ready to begin a new treatment regimen, self advocacy plays a crucial role.
Self advocacy in the healthcare setting can consist of the following:
Speaking up for yourself
Knowing your rights to fair and equitable treatment as a patient
Voicing what you are and aren’t comfortable with
Increasing self determination and personal resilience
Requesting reasonable accommodations when necessary
Taking responsibility for your health to the extent possible
Improving problem-solving and critical thinking skills
Decisively making choices for yourself in the context of your medical care. (1)
Exploring the Benefits of Self Advocacy
Developing self advocacy skills can be particularly helpful for young adults living with chronic conditions. Some benefits include:
Learning to advocate for yourself can help reduce bias, systemic hierarchies, and discrimination within the healthcare system. As more young adults with chronic illness begin to speak up on this issue, support can be enhanced and better outcomes may be achieved.
Self advocacy can help ensure that your needs are sufficiently met and adequately heard within the healthcare system. By using your voice to speak up and advocate for your individual needs, your provider can help ensure that your personal goals are reached and that your preferences and personal values are taken into consideration.
Self advocacy can also lead to improved health outcomes by empowering patients to ask questions and speak up when they’re not comfortable with a recommendation being given. (2) This promotes higher expectations for excellent care within the medical field as a whole.
As a young adult with a rare condition, you know your body best. Therefore, learning to advocate for what you need, how you feel, and which treatment option(s) you think are best for your needs is essential.
At the end of the day, self advocacy protects both the patient and the provider by ensuring that pertinent information and relevant treatment options are given. It also helps guarantee that the time spent at each appointment is used wisely.
Strengthening Self Advocacy Skills
It’s crucial to recognize that self advocacy—and its corresponding benefits–cannot be achieved unless young adults with chronic conditions have the opportunity to personally develop the skill in the first place.
Considerations to keep in mind when building self advocacy as a patient include:
Remember that it’s always okay to say “no.” (3) You’re not required to give consent for anything you’re not comfortable with. When a provider suggests a treatment option, new medication, or opportunity for further testing, you have the right to decline.
On the flip side, it’s also okay to advocate for treatment, testing, support, and/or accommodations that you find helpful when accessing healthcare. If your provider isn’t open to thinking outside of the box, willing to try new approaches to treat your condition, or showing you the care, dignity, and respect you deserve, it’s okay to seek a second opinion or find a different provider altogether.
When preparing for a visit with a medical professional, develop a backup (ie., contingency) plan for how you will move forward if you feel rushed, unheard, or misunderstood. (4) You can choose to use self advocacy skills to speak up for your needs in the moment, bring along someone who can help advocate on your behalf, or consider finding another provider who listens to your concerns from a holistic perspective. The choice is, ultimately, yours to make!
If you don’t fully understand a procedure, treatment, or testing option that’s being recommended, you have the right to request additional information–along with a more detailed description. Bottom line: you have the right to fair, equitable treatment. Choose to speak up for yourself and remember that you can always request a more substantial explanation of your medical care.
Prepare for appointments ahead of time, stay organized, keep a detailed planner with notes, and come prepared with questions for your provider at each visit. (5) These steps can help you advocate for your needs within the healthcare system and ensure that you receive fair, accessible treatment for your chronic disease.
Take a deep breath and remember that the provider you’re working with is here to help you. If you feel unsupported, invalidated, or misunderstood at any point, it’s okay to speak up, ask for a support person to accompany you to your visits, or switch providers. You’re the consumer, so you have the autonomy to decide which provider(s) you see!
When possible, it may also be helpful to remember the “three Ps” for success during encounters with medical providers: patience, persistence, and pleasantness. (6) Establishing healthy boundaries, building rapport with providers, and honing your own self advocacy skills are crucial components for many living with a chronic or rare disease.
Self Advocacy in My Personal Journey
As a young adult living with several chronic conditions, self advocacy skills did not come naturally to me at first. I feared many of the follow-up visits I had with medical providers and often struggled to speak up for myself and advocate for my needs in the healthcare setting.
For most of my childhood, I was soft-spoken, quiet, and reserved, but I’ve now come to the conclusion that having the ability to speak up for my own needs in the medical setting is essential. Finding a trustworthy team of doctors that I could count on was the first step in the process. Once I found a team of providers who understood my complex medical presentations, I began to realize that I don’t have to walk this journey alone. It can take time to build rapport with doctors in the medical community, but it’s worth the investment in the end.
Relying on my faith, family, and friends for support through the highs and lows of life as a young adult with chronic conditions has been truly invaluable. I encourage you to find your voice, honor your need for self advocacy, and not walk this journey alone. You’ve got this!
If you identify a young adult with a chronic or rare disease looking for support in finding your voice, sharing your personal story, connecting with others, or speaking up for your needs within the healthcare setting, consider attending one of Our Odyssey’s upcoming events where you can join a community of other like-minded individuals.
Additional Resources for Self Advocacy
Kenna McEvoy is deeply passionate about serving, encouraging, and mentoring others. She has experience working as a patient advocate in the medical and mental health fields and particularly enjoys supporting those with chronic illness, rare diseases, and neurodevelopmental disorders. Battling her own health journey since early childhood, Kenna is dedicated to using her story to inspire and empower others. She partners with Our Odyssey as a social meet-up moderator and member of the YAPAC (Young Adult Programming Advisory Council) for 2023.