Through the Eyes of a Lupie

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.

Living with Lupus

Being diagnosed with lupus or having to live with it for many years, learning to adjust with, what can be a very debilitating disease, is not an easy task. One thing that is consistent when coping with a chronic illness such as lupus, is the undeniable affect that it has on the mind and body; however, this may vary from person to person. Nevertheless, with the right tools, support, and education, one can ultimately lead a positive and productive life with lupus.

Learning how to manage the daily struggles of a disease that’s both chronic and unpredictable is key to living well with lupus. The first step is to identify all sources of stress in your life. Don’t be afraid to ask for help. Asking for help when you are experiencing lupus symptoms that may limit your functioning, such as pain, stiffness, and fatigue is one way to lessen stress. Taking time for yourself and establishing activities that aid you to relax and relieve stress are others.

Exercise is essential to your health. When your body allows you to, try a regular program of low-impact exercise, such as walking, swimming, yoga or aqua aerobics, all of which may help reduce stress, and improve strength and movement. It is important to first ask your doctor which exercises are best for you and your condition.

Another key factor is one’s diet. Create a diet around lots of fruits and vegetables, as well as, whole grain, and try not to eat too much red meat. Additionally, consumption of a daily multivitamin is vital for supporting your immune system. One of the most troublesome lupus symptoms is fatigue. Taking short naps when possible may be beneficial for lupus sufferers. Never feel bad for having to rest throughout the day.

Because sun exposure can trigger a lupus flare, wear sun screen minimum of SPF 15 and broad-spectrum coverage for both UVA and UVB protection. Consider wearing a hat or cap to protect you from the sun. As well, another key component is to establish a strong support system. This may be through family, friends, co-workers, neighbors, churches, or a support group to help cope with the many complications that lupus presents. Become familiar with your medications, especially the side effects so that you’re not alarmed should they present themselves.

Lupus sufferers who take an active role in their disease management may eventually learn their triggers and early symptoms well enough to predict or prevent a lupus flare. Educating yourself about this disease is of utmost importance. The more you know about your lupus and how it is affecting your body, the better you will be at managing lupus symptoms and flares. Some things are just out of your control, worrying will not change the circumstances, but will ultimately elevate your stress levels causing you to flare. Therefore, relax, breathe, and heal.