Educating Others and Rising Above Stigma
Last updated: March 2023
Sometimes it's not that easy to walk around with an autoimmune disease in the world because no one understands. Just recently, this beautiful woman and I had an intellectual conversation about our health and she could not believe everything that I went through.
At first, she told me that I was too young to be complaining about my health because it could have been worse. I completely understand from her perspective and she does not understand my history or my story. She was shell-shocked when I educated her about the ups and downs of lupus. The thing I learned is not to get offended, but to educate.
Defining lupus and the issues it causes
First, I defined the different types of lupus: Systemic Lupus Erythematosus (SLE), Discoid Lupus Erythematosus (DLE), lupus nephritis, Drug-induced lupus, and neonatal lupus. Second, I explained that I had lupus ever since childhood. What makes life harder is that stress triggers your lupus and everything stresses your lupus. Work, school, and normal daily life problems. Third, I started to talk about feeling like a burden because I have an autoimmune disease, but I could not do that without telling my story. I told her I suffered 2 kidney failures but I told her my accomplishments.
Overcoming feelings of being the weakest link
I was able to have a healthy daughter. Even though I wanted to give up I finished my Associate's degree and now I am moving on to my BSN in Nursing. I told her at the end of my BSN, I planned on having my second and last child. Then, I planned to get my MSN to become a Family Nurse Practitioner. I told her that there were many nights and days that I cried because I have seen other people's life moving and mine being at a standstill. Everyone traveling and living their lives, where I have to get approval just to live mine. Lupus has caused a lot of conflict with being myself again but I slowly found myself. Because something about feeling like the weakest link puts motivation into you and keeps you pushing. It took me this long to get my Associate's degree but I never gave up and never failed.
She asked me how is lupus diagnosed? I researched and told her, according to John Hopkins Lupus Center, the ACR criteria include malar rash, discoid rash, photosensitivity, oral or nasal ulcers, arthritis of multiple joints, inflammation of the lining around the lungs or heart, kidney disease, neurological disorders like as seizures and psychosis; and blood disorders such as hemolytic anemia, leukopenia, and lymphopenia.1
Let me say this, feeling like the weakest link at times can give you so much motivation if you find something or someone to be motivated for and that person can be yourself. For me, it was my family! The weakest link is the strongest in the chain because it can break it. Break repeat cycles and repeat actions to where it's not the same when you succeed and make it past what you expected you ever were.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?