The “invisible” nature of lupus flares can make it hard for others to understand the severity of the illness, leading to misinterpretations and lack of support.
“Lupus is a disease where the immune system mistakenly attacks healthy tissues and organs, including causing “Lupus Fog/Brain Fog.” It can affect any part of the body. When lupus affects the spine, the immune response attacks normal proteins, leading to joint and nerve destruction, bone loss, inflammation, and swelling. As damage occurs, your spinal discs are less able to absorb shock, which can lead to the pain associated with DDD.” (Degenerative Disc Disease).
And this is my diagnosis…Lupus (SLE), and DDD.
Due to a surgery in July, 2025, Lupus was activated, and I have been unable to recover thus far. Prior to that surgery, I was footloose and fancy free. 😊
Recently I read about a woman experiencing a flare who wrote: “For me, I may see a rash appear on my face and I know this is the beginning of a flare. Friends, family, and co-workers often can’t begin to understand that the rash is the beginning of what is taking place on the inside. You appear okay, aside from the rash, but fatigue and pain can be an overwhelming challenge.“
Recently, I went to an event and I looked like the healthiest version of wellness with my hair, nails, and makeup done flawlessly, and smiling and greeting other attendees. I was experiencing a tremendous amount of pain, and I could literally feel my legs beginning to swell, in fact, you could see my knee swelling through my pants. The burning and sharp pain shooting down my legs and in my back, in addition to my hands beginning to stiffen and swell was obvious. After about 15 minutes, a friend walked over and asked if I was okay as she noticed my demeanor had changed from when I had arrived. I told her that I really needed to go home, and I quietly made my exit, making this disease even more invisible. I always feel that I am making others uncomfortable when I am experiencing pain. I am often told by friends and family that they would have never know I was in pain because “you look so healthy.”
Lupus IS invisible. If I am not limping, one would never guess that every joint, from my arms, hands, fingers, and legs, are so swollen and in pain. I think the lupus community as a whole experiences this invisible pain.
Yesterday I arrived to work at 7:15 am, and felt confident that my Lupus was going back into remission, but by noon, after I had walked excessively, sat, stood, bent down, twisted, (all the things I was told by my doctors NOT to do), I could barely stand up. The pain was so intense, it caused me to feel sick to my stomach. When it was time to leave at 3:15pm, I was completely swollen and could only slide my left leg as I walked to my car because the swelling would not allow me to bend/step…
The great news?…
Today, I begin a new treatment…I pray that my body responds favorably.
I love my work as a Reading Specialist, a Mental Health and Wellness Educator and Coach, and love spending time with loved ones, so I am praying that the excruciating pain and profuse swelling is alleviated with this new treatment. My treatment consists of an integrative approach which is what my book, Write Pray Recover:A Journety To Wellness Through Spiritual Solutions and Self Care, encourages.
The marriage of holistic solutions and traditional medicine offers a variety of treatment tailored to my health and wellness goals.
And please know that Lupus flares ARE invisible. Your smile and empathy encourage me to keep going.
Love and blessings,
Wendy
For more information on Lupus, go to https://www.lupus.org
Write Pray Recover 