Living with Lupus
“As I was brushing my long hair one night, I noticed that it started coming out in globs. This was not the first peculiar and alarming incidence to happen to my body. My joints were massively inflamed to the point where I could barely move. My hands, my arms, my feet, my legs – all of my movements were agonizingly limited. They were so limited, in fact, that I could not lift up my kitty to give him a kiss in the morning. I could not lift my coffee cup to have a sip before work. Writing became nearly impossible to complete on my own and I struggled even signing my name on the bottom of a check. I could barely move at times; I was forced to grip the railing if I had to walk up and down the stairs or put all my energy into pulling myself off the bed or sofa. I had no idea what was wrong with me and I was startled, anxious, and frightened.”
I struggled for months as I tried to deal with the pain and find a correct diagnosis, all while I debated the severity of my symptoms within myself. The odd thing was that my symptoms would come and go in waves throughout each day. I would experience the most amount of pain at night and into the late morning, which is when I knew something serious was happening to my body- something serious and something seriously wrong. Yet, at the same time, when the pain went away, I thought my “problem” must be going away too and I would frequently undermine the severity of the situation and I would question myself.
Undermining my symptoms wasn’t the only thing I was doing wrong. Another problem was that I was not advocating for myself soon enough. The pain initially began in my hands and arms, which I mistakenly thought was arthritis although I was only 25 years old. When I went to my general practitioner the first time, she decided that it was nothing to worry about and in a few weeks I should check back. She offered me hardly any help, no resources, no advice, and absolutely no support. One week later, however, the pain had increased at what felt like an exponential rate. Simple, everyday tasks that I used to do with extreme ease became excruciating and I had no idea why. I could no longer drive, wash my hair, or even open a box of cereal. Everything hurt and everything caused me enormous amounts of physical stress and pain. My husband was doing everything that he possibly could for me, but nothing helped. He did not know what was going on and I did not know either. At this point, I was petrified of what was happening to my body. The worst part of all the symptoms was not knowing and not knowing what to expect next. I know myself and I know my body – I knew that this illness, that these constant pangs of physical torment were not merely psychosomatic, so I took the initiative and I began to do research on the internet. I felt almost intuitively that I had Lupus, especially after talking to a family friend that has been suffering from Lupus for years; which form, however, I was unsure of. I went back to the doctors and, in fact, I had tested positive for Lupus. However, since it is a difficult disease to diagnose (it is known as the “imitator” because it mimics many other diseases) and patients must meet a minimum number of symptoms, it was ruled out. This time I left the Doctor’s office with pain meds and a sense that my doctor didn’t believe me. I thought I was going crazy; I felt so frustrated, dejected, and alone. I was so discouraged that I decided to bottle up my pain and not tell anyone about my bodily distress and anguish.
A few weeks later, the pain and swelling had spread down my legs and into my feet. Walking was excruciating and absolutely unendurable. Teaching for a whole day, while keeping my pain a secret had become unbearable. I wanted to burst out and cry everyday but I somehow managed to bury the pain deep down while I was at school. At this point I had been going to the doctors two to three times a week. I had done X-Rays and other tests, and felt like I’d given blood for every single test imaginable. After all the tests and no conclusive results (other than testing positive for lupus), my doctor said “great news- we didn’t find anything wrong with you.” I knew it was finally time for me to stand up for myself and to become my own advocate since my Doctor did not care to advocate for me. I switched general practitioners, and went straight to the hospital where a Rheumatologist diagnosed me with Systemic Lupus (or SLE) on the spot. Systemic Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). In lupus, something goes wrong with your immune system. Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
My biggest challenge throughout all of this was being strong at school and in front of my family. They could all see some of the symptoms; my hands were so swollen I couldn’t wear my ring, I was losing my hair, I had no energy at all. Yet, no one knew of the severe pain that I felt except for my husband, and even from him I would often hide my tears. For whatever reason, I thought that being strong meant hiding the truth and severity of what I was experiencing. The truth is, however, I should have been crying into my husband’s arms or calling my best friend and sharing my pain. I should have informed my school district sooner and explained the severity of Lupus as many people are unfamiliar. Instead I battled through the worst pain of my life and I did it almost on my own. I have been struggling now, however, with the emotional damage that keeping this secret has caused and am trying to share my experience with others. I am taking medications now to help ease the pain and swelling, as well as preventative medicine that will keep my immune system under control. Living with Lupus will be life changing, and I know that I will have healthy periods of remission, but at the moment- I’m still hurting and sick. I draw strength everyday from God and my family and I stay positive knowing that there is a purpose for everything in life and I am grateful knowing that it could be worse. I always joke with my husband and tell him that no matter how badly I feel- I’ll never walk out of our house without make-up and heels on!
