Lupus is one of those diseases where there is no single doctor’s visit that changes your world. For me it took a grueling six months (more when you take into account when I began to fall dangerously ill) before I was told the medical verdict. Even then, it was accompanied with a vague hand gesture and a: Eh, let’s say it’s lupus and see what happens.
What is Lupus?
Lupus is a chronic disease that can cause inflammation and pain in any part of your body. It’s an autoimmune disease, which means that your immune system attacks healthy tissue instead. Systemic lupus erythematosus (SLE) is the most common form of lupus.
I was very young to have lupus which I think is why everyone was so hesitant to name the bundle of symptoms I was afflicted with; nineteen and in my second semester of college. The first time I was dragged into a doctor’s office by my mother because something was seriously wrong, the doctor (male of course) told me my bone weariness, aches, and trouble breathing could be fixed by drinking more water, closing my eyes and thinking of a ‘happy place’.
Lupus isn’t one test and you have the answer. For me it took a series of three tests and a checklist where I had to answer yes to a majority of questions to get “Eh, let’s say it’s lupus.” The second test came back positive and my primary care doctor washed his hands of me because it got too much for him. He recommended a rheumatologist who would administer the third test, but she had a waiting list that was three months long.
Those three months were so very, very long. A doctor cheerfully told me that people with lupus were lucky to live ten years past being diagnosed and the internet (new and unchecked at the time) didn’t do much to contradict him. Thankfully the doctor and the internet articles were based on research done in the 50s and lupus patients can have long, nice lives.
I spent three months knowing that two tests said I probably had lupus and with my symptoms I knew the third test would be positive. I also thought I would be lucky to live to see 30. I stayed up late a lot of those nights to use the quiet witching hours when my mother was asleep, and the house belonged to just me to think questions way too hard for anyone let alone a nineteen-year-old. Should I finish college? What was the point of going into debt just to have a few years of work before I died? Should I start working full time while I was able to help my mom pay for my upcoming medical costs and my funeral? Drinking water and thinking of a happy place didn’t help.
I finally got into to see the rheumatologist who gave me the third test which did come back positive. But I also got the news that this wasn’t the death sentence I thought it would be. My rheumatologist had lupus and had had it for twenty years. She gave me advice and thankfully some medication that actually worked. Guess it is lupus after all.
Common signs and symptoms of lupus
Extreme fatigue (feeling tired all the time)
Pain or swelling in the joints
Swelling in the hands, feet, or around the eyes
Low fevers
Sensitivity to sunlight or fluorescent light
Chest pain when breathing deeply
Many people with lupus also have problems that affect their skin and hair, like:
- A butterfly-shaped rash on the cheeks and nose
- Hair loss
- Sores in the mouth or nose
- Fingers and toes turning white or blue and feeling numb when a person is cold or stressed (Raynaud’s Disease)
You can find a lot of helpful information at Lupus Foundation of America.
Lupus can be a scary diagnosis but there are many good resources available. This book is like a bible to me: The Lupus Encyclopedia: A Comprehensive Guide for Patients and Their Families by Donald E. Thomas Jr.
If you want to chat with other women with autoimmune conditions like Lupus, join the Brains and Spoons Facebook Group
