Lupus Greater Ohio on Capitol Hill
This quarter, Living with Lupus magazine is focused on taking the reins of your lupus and making the most of life with a chronic illness. Over the past decade that I have worked for the Lupus Foundation of America, Greater Ohio Chapter (LFA,GOC), I’ve had the privilege of speaking with many lupus patients. Every patient is different. Some have a positive outlook, and some struggle to remain optimistic. Often it depends on whether a patient is having a flare, their support system, their spirituality, and previous life experience(s).
All lupus patients know that we have periods of remission and flares. Sometimes we feel great, and other times we feel awful. So, what can we do? Sometimes it’s about taking back the control we’ve lost. One of the ways we can do this is through the power of advocacy. The Missouri Foundation for Health defines advocacy as,
“any action that speaks in favor of, recommends, argues for a cause, supports or defends, or pleads on behalf of others.” At the LFA, GOC, we take it a step further. It is important to advocate not only for others but also for oneself.
You have seen us and many of our volunteer advocates at the Ohio State Capitol and Capitol Hill in Washington D.C., advocating for lupus funding as well as creating awareness. These are both incredibly important actions. There is also a lot of communication and letter writing that goes on behind the scenes in support of or opposition to many bills that are proposed. It takes a lot of effort to weed through the political bureaucracy and figure out what is important to the lupus agenda. Lupus patients, even when they aren’t feeling well, can take control by participating in letter writing and phone calls to state and national legislators.
When the office puts out a call to action, take back your power by responding. These small actions have big consequences, and we encourage you to get involved and do what you can.
Another way advocacy can help us, as patients, feel better about our circumstances, is to become self-advocates. Self-advocacy is about communicating your needs, speaking up for yourself, educating yourself, asking questions, and working with your provider to create a healthcare plan that works for you. Many of us feel intimidated by healthcare professionals, but let me tell you, there is no dumb question. The more you educate yourself by asking questions, the more informed you will be and the better you will feel about the decisions that are being made regarding your plan of care. It is ok to ask your doctor what side effects can be expected, explain your limits, and just say no. However, make sure you understand the consequences before you make these decisions. Have open and honest conversations with your physician and make sure if you don’t understand something that you ask for clarification. The more knowledgeable you feel, the better positioned you will be to take control of your health and ensure you are not just a bystander in your lupus journey. You can take the reins today by being an advocate for yourself. And if you are not up to the task because of how awful you feel, appoint someone you know. Make sure you plan for this ahead of time and ensure your advocate knows your wishes. Put it in writing so they can refer back to it.
READ THE REST OF THIS ARTICLE AND THE REST OF LATEST ISSUE OF “LIVING WITH LUPUS” HERE