Have you ever been in a space, where you felt unheard, and ignored? Since 2009, I’ve chose me, and will continue to fight for not only myself, but other women that looked like me. Despite working in healthcare, at the age of 24 years old, I was diagnosed with Sjogren’s syndrome, however doctors were skeptical to my diagnosis. What does that mean? Well, I was symptomatic, and had symptoms like someone with Lupus, however none of my test results really showed much to support it at first. The only thing I new is that I had excruciating pain, and was terrified… to be honest, also felt like maybe I was going crazy. After being prescribed a ton of medication, that nearly killed me, I went to the hospital. At the hospital the doctor told me, that the drug I was on (hydroxychloroquine 800mg), was way too much for my age, as one side effect, was vision loss. Fast forwarding to approximately 2019, 3-4 rheumatologist later, I was put back on Hydroxychloroquine (200MG), at the age of 34 years old. Now, from 2009 I did the wrong thing, I stopped all of the medication out of fear and rage. Which, I should’ve done more research. Despite the fact that now fast forwarding to 2024, it was discovered that I was on the wrong medication once again. I still wasn’t heard fully, but thankfully, God sent me an angel, Dr. Paige Harrison. Despite, Dr. Harrison being my physiatrist (rehab doctor), she felt sorry for my case, and lit a fire under my rheumatologist (specialist that of autoimmune disorders). After, imaging it was determined that I have osteoarthritis, and my doctor’s response, upon reading the results “my dear you must be in a great deal of pain, I am so sorry”.
The experience of feeling unheard and ignored is unfortunately prevalent among patients with chronic illnesses, particularly women of color. This can lead to feelings of isolation and frustration, especially when seeking validation for debilitating illnesses that may not be immediately visible or quantifiable through lab results. My journey in making an impact in healthcare, illustrates the importance of self-advocacy in health care settings- especially for marginalized groups who may face additional barriers in receiving appropriate care. I wish I could tell my 24-year-old self that you are strong enough to get through this, and to research! I have to say that I am very grateful to work in the same hospital and nursing home, for the last almost 19 years.
During my journey in working as the Senior Manager of Admissions, for a facility that is in the inner city of Baltimore, has been rather rewarding. I have been a pivotal point, to educate persons of color in the inpatient environment. Continued education about autoimmune diseases among both patients and providers is vital in improving outcomes and ensuring that individuals feel heard throughout their treatment journeys. My goal in life is to help others! It is my destiny, and life mission. As I know what it is like, to be looked at to be “drug-seeking”, with a pain level of 20 out of 20, and do not even take narcotics. I know I can not change the entire world, but I’m definitely working on leaving my imprint behind.
How is all of this relevant you may ask. Well similar story like mine, my mother had a similar experience. In her early 30s, she felt a lump, and it took 3 oncologist, prior to her being diagnosis with breast cancer. She was the epitome of warrior! She fought, and sadly after 20 years of bring in remission, the cancer returned. Seeing my mom, being so defeated hurt so badly, however this time it mediatized all over. Still a warrior, the doctor recommended hospice, she fought 4 years, and passed away November 25, 2019. Breast health education is very personal for me.