How to Be a Lupus Advocate

US Capitol Building, National Mall and Northwest Washington at sunrise from Library of Congress, Washington DC, USA
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When it comes to your life with lupus, you are the expert. You have the lived experience of managing lupus. And there are many ways for you to use your voice and experience to advocate for your needs and the needs of the lupus community.

Your goal as a lupus advocate is to get what you need from someone who has the power to give you what you need. This could mean speaking up for yourself to your doctor or navigating the world of health insurance or other benefits.

It could mean using your voice to gain the attention of local organizations who need to learn more about lupus. Or it could mean working with government officials at the local, state, or federal levels to gain support for health-related funding or health-related policies.

Speaking up for Yourself and Advocating at the Personal Level

You can be an advocate for yourself in many ways. In fact, you probably already are. Communicating effectively with your doctor, for example, is one way that you are an advocate for yourself: You ask questions. You are assertive when you need to be by not shying away when you have concerns about your medications or treatments.

Avoid the trap of the Good Patient Syndrome. The Good Patient Syndrome is when a person believes that they will get better health care if they are agreeable. They believe that speaking up for themselves will make their doctor like them less.

And if their doctor likes them less, their doctor will provide them with lower quality health care. This is not true.

You will improve your chances of getting the best healthcare by practicing good communication skills with your doctors, which includes asking questions, stating any concerns, and communicating what you need.

Sometimes advocating for yourself means seeking help and finding someone who can, in turn, advocate for you at a different level. For example, you might contact your local lupus organization if you need to find prescription assistance to help pay for your medication. You might speak with your hospital's social worker if you need help understanding medical bills, especially if you need them to teach you how to effectively dispute a charge or obtain financial assistance from the hospital. You might seek help from a local organization that helps with health insurance or food stamp enrollment.

Increasing Lupus Awareness and Advocating at the Community Level

Raising awareness about lupus is important for a few reasons. Most importantly, the more medical professionals and patients know about lupus, the more quickly a person could receive an accurate diagnosis. The more awareness there is about lupus, the more lupus research and services there will be. With lupus awareness, the more understanding there will be about the disease and the less isolated and misunderstood people with lupus will feel.

Get involved with your local Lupus organization. Lupus organizations do a lot of work to raise lupus awareness—like walks, local education and fundraising events, and social media awareness campaigns.

They often seek help from volunteers. Contact your local lupus organization to attend their lupus education events so you can keep up-to-date on lupus. This will help you be an informed advocate. But also contact them to find out how you can help them with their work. They might need help with staffing health fairs or their annual walks, for example.

Share information with others about Lupus. If you ask them, lupus organizations will often provide you with educational material about lupus that you can give to people. You can leave stacks of these in places like a local library, hair salon, doctor office, place of worship, government office, or cafe.

People will see them, take them, read them, and learn about lupus. This will also help people become aware that there is a local lupus organization that offers support and resources.

Don't forget to educate your doctors. Not all doctors know much about lupus, especially if they don't work in rheumatology. That's why efforts like The Lupus Initiative exist. Their website explains, "The goals of these educational resources [that they provide to medical professionals, patients, and their supporters] are to increase the number of medical professionals with knowledge and expertise in the diagnosis and treatment of lupus, to lessen missed and misdiagnoses, to improve communication toward greater patient adherence to treatment regimens, and to increase the number of patients who take an active role in their disease management."

If you'd like to obtain information on how you can connect health professionals on your healthcare team with these free resources, contact The Lupus Initiative.

Organize a Lupus presentation in your community. People with lupus and their loved ones sometimes organize lupus education events of their own. These are easier to do when there is a built-in audience like at a workplace meeting, during a class, or during or after a service at a place of worship. It's often helpful if information about lupus is coupled with someone's personal lupus story. Lupus symptoms can be hard to understand, which is why hearing someone speak about their personal experiences can make the disease easier to understand.

Spread awareness on the internet. The Internet, especially social media, is a powerful tool for raising lupus awareness. People share their personal experiences on their blogs or as status updates on social media sites like Facebook. Image sharing sites like Instagram are good for sharing photos of what life with lupus looks like. Lupus photography project websites like Lupus through the Lens also offer powerful photographic examples of a life with lupus in pictures. Twitter and Facebook chats are organized to connect people with lupus to each other or to healthcare professionals. Lupus-related hashtags—like #lupus, #lupusawareness, #spoonie—help people find posts about lupus and chronic illness.

The nice part of sharing on the internet is that you can share about your experiences, but you don't have to use your real name. The anonymity might help people share more honestly without worry that what they say could be traced back to them. This is especially important if they don't tell people in their lives that they have lupus, like their coworkers and employers.

Writing and sharing about lupus can feel therapeutic, and it is helpful to people who read your posts. Readers might feel less isolated if they identify with something you say, or they might gain a better understanding of another person's experience since not everyone's experience is the same. This information also helps people without lupus to better understand the disease.

Participate in a Lupus walk. Lupus walks typically raise money for lupus research, which is important. But they also help raise awareness about lupus. Walks can bring a group of people together who might not normally participate in a lupus event. They might not have previously known much about lupus either. Walks are a great way to keep your loved ones involved in the lupus community. When at a walk event, you can walk as much or as little as you like. Walks are also great ways to become involved or volunteer with your local lupus organization. If you're up for it, ask them about ways you can help out with their walks.

Becoming an Advocate for Healthcare Policy and Funding

Stay connected with Lupus organizations. Lupus organizations are often aware of local, state, and federal advocacy opportunities. Contact your national lupus organizations like the Lupus Research Alliance or the Lupus Foundation of America to find out what advocacy opportunities they offer. If you sign up for their newsletter, you might receive email campaigns asking you to take action. An action could be doing something like contacting your government representatives. Also, contact your local lupus organization. They might be involved in advocacy, as well. Lupus advocacy campaigns could be related to healthcare policy or health care funding.

The World Health Organization defines healthcare policy as "decisions, plans, and actions that are undertaken to achieve specific health care goals within a society." A major example of healthcare policy is the Affordable Care Act (ACA; also known as "Obamacare), which was signed into law in 2010. And within the ACA, there is a key feature that makes it illegal for health insurance companies to refuse to insure people with pre-existing conditions.

Pre-existing conditions are health conditions that existed before the day you applied for health insurance. In some states, it used to be difficult for people with lupus to obtain health insurance because lupus is a pre-existing condition. Yet, having health insurance coverage and being able to access medical services is critical for people with lupus. As you can see, healthcare policy can have a negative or positive impact on people's health, which is why these policies are important.

An example of healthcare funding advocacy would be traveling with your local lupus organization to Washington D.C. to meet with your representatives. At these meetings, you would ask them to support an increase in health research funding. Such funding could be for research supported by the National Institutes of Health so that biomedical and health-related research for diseases like lupus can continue.

Advocating for Patient-Centered Care

Push for participatory medicine. According to the Society for Participatory Medicine, "Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual's health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care."

One important aspect of participatory medicine is that patients and doctors should be seen as partners, especially when it comes to making healthcare decisions. Having access to electronic health records (EHR) and understanding and protecting your rights regarding health information privacy related to the Health Insurance Portability and Accountability Act (HIPAA) are two ways to push for participatory medicine
 

Participate in patient-centered research. Traditionally, medical and health-related research is conducted by doctors and scientists. Previously, the only way that patients could participate in research is by participating in a clinical trial. Now, with organizations like the Patient-Centered Outcomes Research Institute (PCORI), patients can be part of the other side of research: Patients can propose research questions and be involved in every step of the research process. Patients can also apply to be part of PCORI's advisory panels. 

Final Thoughts

Being an advocate for yourself is the most basic and necessary form of advocacy. Everyone with lupus or any health condition should practice this kind of advocacy. If you do nothing else do this: Practice good communication skills with your doctor, which is a way to help ensure that you are getting the best care possible.

There are a lot of options to get involved in advocacy at other levels. If you are interested in advocacy, choose what works best for you and your lifestyle. Though it can be tempting, try not to take on too much at once. Otherwise, you will become overwhelmed. Managing energy and fatigue applies to your lupus advocacy work, too.

All advocacy matters—from sharing a post on social media about lupus to traveling to Washington D.C. to speak with your government representatives. All levels of contribution are important. Nothing is too small, so do what fits best with your lifestyle, abilities, and energy level. Your voice matters!

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