How to Advocate for Yourself as Someone with a Rare Disease
As someone with a rare disease, you already know the challenges of being heard. You’re dealing with a disease that is rare and may not have enough available research to assist you with seeking care and treatment. So, living with a rare disease, or any disease, can require a lot of self-advocacy. You may have to speak up for yourself when you disagree with your doctor or to help others like yourself living with a rare disease.
To celebrate Rare Disease Day, here are seven ways to advocate for yourself with a rare disease.
Create a solid healthcare team
As a rare disease warrior, having a strong healthcare team can help you navigate health management. Depending on your disease, you can search for specialists to care for, manage, and advocate for your condition. You can request referrals from your primary care physician, or you can do your research by using websites like Zocdoc or similar platforms to find your next doctor.
Research your condition and treatment options
Although there may be limited information, research your rare disease and determine available treatments. A key aspect of rare disease self-advocacy is a strong overview of your symptoms, risk factors, and potential treatment options for your disease. Then, as you go to doctor’s appointments, use your research as a guide when speaking with your healthcare team.
Here are some resources to help you learn more about your rare disease:
Get prepared for your doctor’s appointment
As you meet with your rare disease specialist, you’ll want to make the most of your appointment. Living with a chronic disease, especially a rare one, may require more time and patience to coordinate an effective health management plan. With this in mind, you can assist with the process by having your questions and health information ready before your appointment.
To prepare for your appointment:
Jot down any questions you have before the appointment.
Have a list of any symptoms or complications you’re experiencing.
Keep your medical records handy.
Don’t be afraid to share your opinions, but be open to hearing your doctor’s advice.
Prepping for your appointment is a great way to advocate for yourself and your rare disease by showing your desire to be as involved with your health care and treatment as your providers.
Connect with other patients who share the same condition
Having a rare disease can feel isolating at times. Although you may have a strong support system and an excellent healthcare team, it can be difficult for them to relate to your health challenges. Thankfully, several online and in-person communities are designed for people with rare diseases.
Within these communities, people can share their experiences, provide advice, and make meaningful connections with those who can relate to their stories.
Here are some online and in-person communities for people living with rare diseases and their loved ones:
Rare Portal
NORD
RareConnect
Rare Disease International
Check out NORD
NORD is the leading patient advocacy organization for people and families affected by rare diseases. You can find many resources tailored to rare diseases on the organization's website.
On NORD’s website, you can:
Sign up to take part in a clinical trial
Find a local or virtual patient advocacy organization
Learn more about your rare disease
Get caregiver resources
Find an expert
Get help with getting access to care and treatment
Attend in-person and virtual groups
Participate in clinical trials and studies
Many patients volunteer to join clinical trials that test medical treatments for their condition. As someone with a rare disease, one way to advocate for yourself and others is to participate in a clinical trial. During a clinical trial, you’ll get access to new medical treatments that aren’t yet available to the public. In addition, you won’t have to come out of pocket for expenses, as all care and treatment costs are covered.
To find clinical trials and studies to join, search through NORD’s database, or visit ClinicalTrials.gov.
Manage your health data
Trying to manage your health history, medications, symptoms, and doctor’s appointments can be a hassle. One way to self-advocate for yourself with a rare disease is to use a pacing journal. A pacing journal can help you keep track of your energy levels to avoid flares, common among people with chronic illnesses.
A pacing journal can be helpful when discussing your health concerns with your healthcare team. You can download Chronius Health’s free pacing journal to start pacing yourself.
Rare disease advocacy is so crucial for finding effective care and treatment. However, as someone with a rare disease, you may face more challenges getting the help you need for your condition. The tips above are a great starting point for advocating for yourself as a rare disease warrior to ensure your voice is heard.
How Chronius Can Help
If living with chronic illness feels like a full time job, you aren’t alone.
That’s why at Chronius, we make it easy to navigate the healthcare system as a patient. Our online care management platform brings together all of your health records and offers a 1-click appointment prep tool that easily synthesizes your health story for your care team. You also can track all of your symptoms, identify trends, learn from vetted medical information, and follow a custom patient journey map. Plus, if you needs hands on support, our Care Advocates are available to help you with any issues you may hit up against. Personalized support as you navigate your care journey is what we are all about.
Interested in learning more and signing up for our waitlist? Claim your spot today.
