Advocacy: We Have the Strength in Service of Ourselves
“You have the strength to get up.” Many years ago, a woman got up in a room full of over 300 lupus patients and caregivers and made this statement to encourage the lupus warriors to get out of bed and walk. While I am a believer that every person with lupus should exercise, I know that there have been days in which I just left a urinal next to my bed because the pain was just that bad. This woman, whose statement could be construed as careless, made a good point. If we are going to get better, we must take the steps to get better. We must use the limited strength that we sometimes have to make a difference in our own lives.
Lupus warriors push themselves
Fannie Lou Hammer, who is famous for saying, “I’m sick and tired of being sick and tired,” also said, “You can pray until you faint, but unless you get up and try to do something, God is not going to put it in your lap.” As lupus warriors, we push ourselves to get out of bed and get to the doctor to advocate for ourselves in front of our doctors. We take those small steps to take a shower, brush our teeth and use the last bit of strength in hopes that the doctor will say something promising We know going to the doctor is not going to make us feel better, but we have faith that if we keep going, we will eventually see remission again.
We advocate for ourselves
Every time we see a doctor, call the nurse for advice, speak to the support staff, we are advocating for ourselves. Just like the woman who wants us to get up and walk, it is important that we as lupus warriors act as lupus warriors by advocating. I walked into this arena almost happenstance or maybe on purpose. Lupus is scary. It is scary for a patient and it is scary for the doctor. Lupus is probably one of the most complex medical conditions in existence. It takes 4-6 years for diagnosis and it mimics other medical conditions. Some of the treatments for lupus are as debilitating as the disease and there is no cure for the disease.
People with lupus deserve more
No cure. Some researchers suggest that the first incidences of lupus can be found in the 1800s. There are others that can find have pointed out that lupus has existed since the 1st century A.D. Given that lupus has existed so long, why are we just now developing new drugs to treat it? Some say we don’t have the dollars. Some even say that those in control of research dollars limit funding because of racial bias. One of my favorite researchers, doctors, epidemiologists, rheumatologists, and heroes Dr. Sam Lim has stated time and time again that medical students receive less than 90 minutes of education about lupus in 4 years of medical school. That is scary, especially considering that there is a shortage of rheumatologists in the United States of America. When I speak to the medical school interns or residents that often participate in my medical examinations, I often ask about their ambitions. Rarely, have I heard one of these ambitious stewards of medicine mention rheumatology, nephrology, dermatology, or lupus research.
In my home state of Georgia, there are approximately 55,000 people living with lupus and just over 136 rheumatologists, according to the Lupus Foundation of America. That means about 1 rheumatologist for every 2,000 lupus patients. Over 70 percent of rheumatologists in Georgia practice in metro Atlanta. If you are like me, a road trip or a hotel stay can be costly both on the body and on the wallet. A 4-month wait to see the rheumatologist is not good enough when the joints don’t move or when the potential for organ failure means minutes and not hours.
We have the strength
I am lucky to have been diagnosed with lupus at an earlier age. I am a believer that the earlier one is diagnosed with lupus, the better the outcome and the longer a patient will live. The Lupus Foundation of America, Georgia Chapter, for which I sit as chair of advocacy, is a movement. We have learned to use our voice to make a difference in this state. We will not take no for an answer from any member of the legislature. When they finally said yes, the legislature created an advisory council on lupus so that the government can stay abreast of issues related to lupus. When we told them there is more work that needs to be done, they responded by giving research dollars. We, as lupus warriors, have the ability to get out of bed and to use our strength in service of ourselves. We have the strength not to strengthen the movement so that all of us can get out of bed again.
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?