Learning to tap into your own voice, your own strength doesn’t always happen overnight. One of the most valuable lessons I’ve learned living with Sjogren’s disease—a chronic, systemic autoimmune disease, is the importance of always advocating for the healthcare you deserve. There are many gaps in our current healthcare system, especially as it relates to provider knowledge of the disease. Understanding how your body responds and what you need individually can make a significant difference in how quickly you receive care and the quality of care you receive.
One step at a time, here’s 5 simple tips to help you step into advocating for your very best healthcare.
Know Your Needs— This seems simple, but if a provider asked you at this very moment, “how can I serve you better” what would you say?? Write it down. Think about the areas of your health needs that don’t feel as if they’re ever properly addressed. Think about what makes you feel frustrated after each provider visit. Write it down.
Understand the Disease— Whether it’s Sjogren’s disease, Lupus or some other Autoimmune disease, you as the patient must educate yourself and learn everything you can about your disease(s). This seems a tall task, and it is—considering how hard it is to live life unwell, but this step is crucial. Arm yourself with the power of your knowledge. Learn not just how the disease functions but pay close attention (and take notes) as to how whatever illness you’re living with manifests in your body.
Communicate, communicate, communicate—I can’t stress enough the importance of using your voice. Yes, physicians and health providers have academic training to help treat us, but this is YOUR body. If you don’t speak up for yourself, don’t expect anyone else to do so. You must be an active participant and advocate in your own healthcare. Ask questions, take notes. If something prescribed isn’t working well for your body…. speak up.
Build Your village- The Nigerian proverb of it taking a village to raise a child applies in this space as well. Chronic illnesses often manifests when we least expect it. When we are in the prime of our most productive years. You cannot do it all alone. While each person’s needs will vary, the fact remains you need to selectively and carefully assemble your own village of support. Understand that just as we, the patient has to get a crash course in navigating our disease(s), so do our loved ones. Everyone won’t make the cut. Trust me on that. Take your time to examine your needs, daily. monthly etc. Examine your physical needs (these often change) mental and spiritual. In every area of your life seek out the person or person(s) that uplift you and pour into you in a positive way. Negativity on this journey is not allowed. Find your people and hold them close.
Confidence not arrogance— There is nothing selfish about prioritizing self-care. Remember that. While you cannot reasonably expect that your circle will just “get it” you must exude confidence when asserting your needs. This includes family, friends and your healthcare providers. Be confident, set boundaries but always be considerate.