I am 42 years old, and am suffering from a debilitating disease, systemic lupus erythematosus (SLE). Even now, nearly 12 years after my lupus diagnosis, I have trouble believing that this is my life. Even as the inner turmoil that comes with a lifelong diagnosis subsides, I still struggle to coherently explain to others what lupus is, and why, although I may not look sick, it can be truly disabling.
I was diagnosed with systemic lupus (SLE) and rheumatoid arthritis during the prime of my life, age 30. However, prior to the diagnosis, I experienced several lupus symptoms such as, swollen and painful joints, skin rash, persistent fatigue, and hair loss. As my health declined, I was unable to groom myself, turn on/off a faucet or turn a door knob. I began to lose all independence, as I had to depend on others to transport me to and from any doctor appointments. The uncertainty of this disease feared me, but I couldn’t fathom the impact that lupus would actually have on my life.
I am a Masters Level Social Worker, and found pleasure in my career. I have always enjoyed helping others, and found gratification in protecting vulnerable children from abuse and neglect. Social work was my life, it warmed my heart to know that I made a difference in someone else’s life. Sad to say, after 10 years in the profession, I was forced to resign due to complications of lupus.
Prior to the diagnosis I was an active person who enjoyed life by spending time with family and friends. Some may have considered me to be a workaholic because I usually worked two jobs. However, this was so that I might provide my mother financial support. I am usually not one to complain or desire others to pity me, though, I wish that others would fully comprehend the seriousness of this disease. I have lupus, an autoimmune disease that causes my body to mistake its own cells and proteins for invaders. Then it attacks them with the same force as a healthy immune system attacking an infection. For me, lupus usually manifests as painful flu-like symptoms that doesn’t subside.
Early on in this journey conventional drug therapies were effective in my case. I was prescribed prednisone, methotrexate, and plaquenil, all of which were successful with keeping lupus stable. One year ago I was forced to discontinue plaquenil, seeing that it caused retinal toxicity. Here I am nearly 12 years later, have had my moments of stable health, but I have had many periods of brutal flares. When this happens, lupus decides to make me extremely fatigued. It inflames my joints, making simple tasks and activities nearly impossible. I have suffered from anemia, lung disease, pericarditis, alopecia areata, hypertension, and a decline in my kidney functions. The unpredictable nature of lupus has forcibly shaped my choices in life. Here are a few things that I wish people understood about having an autoimmune disorder, such as lupus.
1. “A good day is a day I can function”
I can’t quite recall the last time that I actually felt “good” without any pain. A good day for me is having the strength to run an errand or maybe complete house hold chores. I am usually limited to the number of errands that I am able to complete in one day. Some of the simplest tasks, such as preparing meals, doing laundry, bathing/showering, causes exhaustion making the next day difficult to perform any tasks. Enjoying outings have also become challenging for me. The enjoyment of an outing usually means several days in bed trying to recuperate .
2. “Treatment can radically change your looks and affect your self-esteem”
After taking steroids for nearly 11 years, I have gained a great deal of weight. As a result of lupus, medications, and alopecia areata, I have lost more than 90% of my hair. Perhaps I may seem vain to some, but for me, my hair loss wasn’t by no means empowering. It caused me to become withdrawn and affected my self-esteem. Besides, I wasn’t given the choice of becoming bald, it was forced upon me. Since, I have found beauty and gained great confidence in my appearance.
3. “I may have to cancel plans”
Because of the unpredictability of lupus, it is difficult to make plans when you don’t know how you will feel from day to day. The exhaustion and pain to even contemplate sitting up, let alone driving to an event is tough. However, I must admit that there are times when I force my body to cooperate, pushing myself for some enjoyment. The truth is I miss my old life. I miss being able to go shopping and hanging out with family and friend, and canceling plans because I feel sick is always emotionally difficult for me.
While the list of problems that are inherent to having an autoimmune disorder might seem overwhelming, like anything else in life, you eventually become better at coping. Most importantly, the thing we need more than anything else from our family and friends is that you’re understanding of our condition, and not resentful for having to care for us. I am grateful that I am still here, standing strong and confident, and full of life.