I have been labeled a “professional patient” before by friends and family. “PP” for short. Inappropriate humor fans, have at it. While this mostly accurate term is not the initial impression I want people to have, if the shoe fits.
Like it or not, the “PP” title has followed me for 13 years now. You may be asking how or why it was bestowed upon me. The short version? I have a pesky and mysterious autoimmune disease called Lupus. The long version? Well, it seems I also have nine lives. While walking to my car years ago, a drunk driver hit me and ran me over (not my best day!). This triggered the Lupus to reveal itself. Since my diagnosis, there has been a flurry of mini-strokes, a small brain aneurysm and blood clots. Throw in some heart issues, chemo and an occasional wheelchair for good measure, and you have my semi-condensed medical history.
These events happened at a young age and I had no choice but figure out how to navigate our country’s health care system and manage a chronic illness, all while attempting to lead a “normal life.” This was especially difficult in my 20s. I was clueless as to how one lives with an incurable illness and felt the medical community did not take me seriously because I was young (and looked even younger).
If you live with a chronic disease, you may be able to relate to me. You likely have a roster of physicians you see regularly, hospital experiences which have taught you a thing or two (or fifty), a small home pharmacy (who says we aren’t ready for the zombie apocalypse?), and an unending desire to get the best health care possible.Everyone wants to feel good. After all, it’s hard to check off our bucket list and accomplish life goals if we can’t get ourselves out of bed. So how can we obtain our best health and health care when battling a chronic and/or incurable illness?
I believe we can make further strides on our “best health care” journey when we feel empowered as a patient. Over the years, a variety of ways to deal with a chronic illness has been compiled in my mental Rolodex. In addition to learning how to be flexible and arming myself with a quirky sense of humor, I’ve also created a list of my favorite patient empowerment tips. These are shared below with the hope that you will receive better health care and improved health outcomes. I have even turned them into a snazzy, easy to remember acronym for you: HEALING. I hope they help you on your journey.
H — H is for health summary. This is vital and you should consider drafting one. Using a Word or Excel document, list your conditions, medicines, doctors, past interventions, outcomes, etc. This will come in handy when you have a new physician appointment, go to the hospital, or if you are unable to speak for yourself and medical specialists need to know your history (let friends or family members know where to find the document).
E — E is for expert. Become an expert in yourself! Research your condition/disease, medication and alternative therapies, and any clinical studies that may be taking place. You may be surprised at how confident you become when discussing your illness with others, once armed with the facts.
A — Accept support. Whether it is a spouse, family, friends or a caregiver, if someone is offering you support, please take it. Something as simple as a friend picking up your groceries, or driving you to a medical appointment, can help reduce stress. If you are in need of support, try searching online for local support groups in your neighborhood. This can be a great way to meet others who are experiencing similar challenges and situations.
L — Look for a second opinion (and do not feel guilty about it). If you are being told you have a disease or illness, you have every right to get a second opinion. By doing so, you may learn of additional treatment options or therapies that were not discussed by the first physician. Prepare well thought-out questions for the medical provider and have it organized and written down so you do not forget anything during your visit.
I — Involve yourself. Most physicians I have spoken to or interviewed in the past state they appreciate patients who work with them and take an active role in their own health care.
N — N is for “Saying no.” Do not be afraid to speak up if something does not seem or feel right. We have instincts for a reason.
G — Give thanks to outstanding medical providers. A simple “Thank you” can make all the difference to your physician and health care staff members. They do not have an easy job. If you have a physician who goes the extra mile to help you, let them know how much he/she is appreciated.
Follow Marisa Zeppieri-Caruana on Twitter: www.twitter.com/Lupuschickcom