Accepting the Invisibility of Lupus

October 11, 2019

by: Sheba Family

As Lupus sufferers, perhaps one of the hardest things to come to terms with is that we often do not look sick. People tend to assume that if we look fine, we are fine. It can be frustrating to experience a lack of empathy and compassion from the people who surround us.

Most of the time, people make these assumptions rather innocently. People are caught up in their own worlds, with their own pains. When I was first diagnosed, I wanted my loved ones to really understand my pain. In later years, I started to worry more if people believed me. I often looked great yet couldn’t get out of bed. Did they think I was faking it?

I eventually realized that no one can truly understand the pain I feel, and, likewise, I do not entirely understand their pain. More importantly, I do not need or want my loved ones to physically or emotionally feel my pain. It would only serve to make them suffer. What I need instead is for them to empathize and understand my needs.

“The Price of Greatness is Responsibility” – Winston Churchill

Once I started to assume that my loved ones, as well as people I encountered, are just doing their very best – given their own circumstances and knowledge – I felt some relief. Instead of being reactive and angry, I realized it is my responsibility to communicate my needs and wants clearly, and on an on-going basis.

While needs are difficult to communicate for everyone, Lupus has the added complication of varying needs on a day to day basis. As I get to know myself, I get better at knowing and expressing what would be helpful. I love the Spoon Theory (https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory) to explain these variations. If it is available, bringing a loved one to a lupus support group or patient conference can also be eye opening.

“Don’t be an invisible patient” – Dr. OZ

The same responsibility of communication extends to healthcare workers and doctors. Taking charge of our healthcare can make a world of difference in feeling less invisible. I love this video of Dr. Oz telling Carrie Ana Inaba to write her questions down and take notes at the doctor’s office https://www.facebook.com/TheTalkCBS/videos/486227682157893/UzpfSTM1NjIzNDU4MTU1NTQ5Nzo2NzIzMzM0NTMyNzg5NDA/.

 “Those who mind don’t matter and those who matter don’t mind.” – Anonymous

Despite the best of intentions, words can come across with a different message than intended. Recognizing this and learning to express empathy over sympathy is an integral step in developing a valuable support system. According to Brene Brown, a research professor, empathy drives connection and sympathy drives disconnection. I whole heartedly love this video from Brene Brown that explains how to empathize with someone https://youtu.be/1Evwgu369Jw.

 “Surround yourself with only people who are going to lift you higher” – Oprah Winfrey.

I have a friend who can look at me and know I’m not feeling well, simply based on my eyes. Her simple acknowledgement makes a world of difference in my day. We, alone, are responsible for the people that surround us. So, keep good company. Lupus is hard enough without people around to drain us of energy and increase our stress levels. No excuses, no complaints, toxic people must be removed and replaced with energizing, understanding, and empathetic people that bring out the best in us.

“If you only say one prayer in a day, make it Thank You” – Rumi

“Gratitude is an opener of locked up blessings” – Marianne Williamson

To be honest, I am quite grateful that I don’t look sick. When I was first diagnosed, I had the malar rash on my nose and cheeks. I was so tired that my eyes were not fully open. High doses of steroids made my face blow up almost overnight. I had bright red stretch marks from the sudden and rapid weight gain. It could have been worse; it could have been better. Yet, I have many blessings. I am humanly upset at times, but I always come back to gratitude. The truth is, if I can get away with people thinking I’m healthy, I’ll take it. If I had to choose between an invisible disease and a visible one, I would choose the invisible one every time. I am grateful for all my blessings and looking fairly healthy is a wonderful reason to be grateful.