My Health, My Voice: Self-Advocacy(Dialysis)

By TinaMarie Cerreta

Self-Advocacy: You Matter


Self-Advocacy in the Clinic: Taking ownership of your health, asking questions, and understanding your lab results. Self-advocacy in hemodialysis means actively speaking up for your own health and treatment needs. It transforms you from just a recipient of care into a true partner with your medical team. It is about having the confidence to ask questions, understand your options, and voice any concerns.[1, 2]

For dialysis patients, self-advocacy generally means taking control of your daily treatment and quality of life. But don't stop there. Be an active participant in your whole life. Advocate for yourself on a daily basis. Its your life, why not take the wheel and take control of the road ahead.

Here is what it looks like in everyday life:

Understanding Your Treatment: Knowing your specific treatment goals, medications, and blood work numbers so you can monitor your own progress. [1, 2]
Speaking Up: Not being afraid to tell your care team when something does not feel right—like experiencing unusual cramping, dizziness, or pain during a session. [1, 2, 3]
Asking Questions: Requesting that nurses or doctors explain medical terms or care plans in plain, easy-to-understand language.[1, 2, 3]
Exploring Options: Finding the treatment style that best fits your life, whether that means adjusting your in-center schedule, trying home-based dialysis, or discussing transplant options.[1, 2, 3]

*Being your own advocate is not about being difficult or challenging your providers; it ensures your healthcare matches your lifestyle.[1, 2] These are guides and tips to help you build confidence in communicating with your care team.[1]

5 Ways to Self-Advocate:

Keep Detailed Records: Keep a chronological file of all your bills, emails, medical or legal documents, and correspondence. Always write down the first and last names of people you speak with on the phone, along with the date and reference numbers.[1]
Write Down Your Facts: Prepare a clear, concise list of questions or concerns before you enter any medical, legal, or professional meeting so you don't forget key points.[1,2]
Bring a Supporter: Invite a trusted friend or family member to appointments to take notes and help you articulate your needs.
Request a Second Opinion: Never hesitate to request another professional's perspective if you feel dismissed or unclear about an action plan. [1, 2]
Write Down Your Facts: Prepare a clear, concise list of questions or concerns before you enter any medical, legal, or professional meeting so you don't forget key points. [1, 2]
Bring a Supporter: Invite a trusted friend or family member to appointments to take notes and help you articulate your needs.[1, 2]
Request a Second Opinion: Never hesitate to request another professional's perspective if you feel dismissed or unclear about an action plan.[1, 2]


**My Humble Opinion**:
I'm a big fan of speaking up for yourself. I mean, who knows you better than you do (besides your therapist, maybe)? So why not speak up for yourself? It's not for everyone, but we should all empower ourselves in some areas of our lives. Talk honestly and openly with your care team, they're there to help. That means all of them; your Nephrologist, Social Worker, Dietician, Nurse, and CCHT/PCT. You should start to build a rapport with them now. Our staff's special knowledge is what makes our dialysis center great. Their training helps them handle complicated machine stuff, keep a close eye on patients, and deal with emergencies super precisely.

I always read my lab results and test findings, then I either look up the medical terms or ask my doctor (not "Dr. Google" – that's a whole other story! It's good for definitions, but your doctor can tell you how it applies to you). I might be a bit neurotic, but I have all my meds memorized, both on and in the bottle. (You never know, you might move a chair and find a pill or two!) This way, you can identify them. I also know my real bank balance, not just what the bank shows.
Make sure you pick your Healthcare Proxy (and a backup!). Pick your designated representative (and a backup!). If you need a Power of Attorney or an Executor of your will, get it figured out (you might need an attorney to help you with a will, or something like that). Write it all down and keep it with your other important stuff so your loved ones know exactly what you want. Do it now because if you wait too long, it might be too late and then your loved ones are left to blindly pick up the pieces. I did some of mine at a great site: MyDirectives.com – they're free and super helpful.(I'm sure there are more free sites.)

I'm trying to get on the kidney transplant list at a local hospital. It's a lot of "hoop jumping." But when I went to my initial interview, I was prepared. I researched what they'd be asking for, records-wise. I made sure I had physical copies of all the info they needed, as well as a list of meds and hospitalization/surgery dates. There were letters from my doctors giving me clearance for a potential transplant. I had my immunization records...you name it, I probably had it.
So, my whole point here is that I was totally ready, as much as I could be. Being prepared won't make the nerves disappear, but knowing you did your best really helps with the anxiety. Plus, it means less work for later.
I think the hardest part about standing up for yourself is learning how to talk effectively. It's all about catching social cues and figuring out how to first get your needs and wants across. Second, you have to learn to be flexible when the situation calls for it. If you can't compromise, you won't get what you want.
I don't always bring a trusted friend or family member to every appointment, but I do for the important ones. I tend to forget dates and how long things last (like relationships and how long I've lived somewhere), so having someone else fill in the blanks is super helpful. Plus, they might remember something you totally forgot.

That last suggestion is the hardest for me to do. Asking a professional for a second opinion always felt like I was telling the "professional" that I didn't trust their expertise. I've since realized that it's standard practice for colleagues to consult with one another. They anticipate this part of the process to happen. And it is a process. I forget that we're talking about my situation and that my best interest is what is important here, so I should make sure what they're telling me is backed up by another professional before moving forward. I'm worth it! Are you?
Well, I'm done for now. I wish you joy and happiness in sharing that with others. Please email me if you have any questions or concerns.
Tina
My Daily Quote:
"Our bodies are our gardens — our wills are our gardeners." — William Shakespeare
Here are some links that may help:
Universal & Community Advocacy
  • Self Advocacy Online: Maintained by the Self Advocacy Resource and Technical Assistance Center (SARTAC), this site is built "by self-advocates, for self-advocates." It features accessible multi-media lessons, toolkits, and a video library on how to live self-determined lives and participate in your community. [1, 2]
  • The Arc: Though known for its work with intellectual and developmental disabilities, this grassroots organization offers universal toolkits, leadership training, and local chapters that help anyone connect with advocates to secure housing, employment, and civil rights. [1, 2]
Healthcare and Navigation:
  • Patient Advocate Foundation: A crucial resource for managing chronic illness or medical bills. They provide free, one-on-one case management to help patients navigate insurance appeals, debt crises, and access to care.
  • Job Accommodation Network (JAN): A free, confidential service from the U.S. Department of Labor that helps employees advocate for themselves. It offers an A-to-Z search for workplace accommodations and provides guidance on how to legally and professionally request what you need to succeed. [1, 2, 3]
Education & Skill Building
  • Understood.org: An excellent resource for general learning and thinking differences, but highly useful for anyone navigating the transition into the workplace or college. It offers templates, career tips, and actionable advice on asserting your learning needs.
  • MentalHealth.gov: Provides government-backed information on how to access mental health services, understand your rights, and have constructive conversations about mental wellness in personal and professional settings. [1, 2]
  • General Skill-Building: For interactive, multimedia lessons on expressing your needs and knowing your rights, visit Self-Advocacy Online. [1, 2]

  • Disability & Neurodiversity: For toolkits and community resources designed for and run by people with disabilities, check out the Autistic Self Advocacy Network. [1]
  • Healthcare Advocacy: To learn how to actively participate in your medical care, speak to providers confidently, and track your health, explore The Care Partner Project. [1]
  • Civic & Legal Knowledge: For nationwide resources on understanding disability rights, voting, and technical assistance, refer to the SARTAC Network. [1, 2, 3]
  • General Self-Advocacy Guides:
    • Communication & Assertiveness: Learn how to clearly and respectfully state what you need using practical tips from Master's Counselling.
    • Navigating Systems: If you struggle to get the assistance you need, try the Right Question Institute, which provides a strategy to help people ask better questions and hold decision-makers accountable.
    Disability & Neurodivergence Resources:
    Student Focus:
    • National Center for Learning Disabilities: Provides T-charts and language templates to help you articulate what you need when you are struggling academically [0.5.2).
    • Child Mind Institute: Offers great guides on understanding your own learning style and asserting yourself to adults/teachers [0.5.24).
    • Project 10: Details the core concepts of self-advocacy, self-determination, and understanding your rights as a youth. [1]
    • Advocacy Games & Transition Planning:
    • Deafverse: A highly-recommended, free, choose-your-own-adventure online game specifically designed for deaf teenagers to practice self-advocacy skills. [1]
    • OCECD Youth Portal: Learn how to speak up for yourself in the classroom and transition to adult life with youth resources from. Provides worksheets like "My IEP Agenda" to help students actively participate in their own Individualized Education Program (IEP) meetings. [1]
    Disability Rights & Higher Education:
    • NCRTM Department of Education: Features resources, training materials, and toolkits on self-determination and supported decision-making. [1]
    • PACER Center: Excellent resources for youth transitioning from high school to college or the workforce, including strategies for independent living. [1]
    My Links:
  • National Kidney Registry (main)
  • My Personal Microsite
  • My Blog
  • My email
  • (Please, please, please share everywhere!)

 

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