I've heard about Lupus but I've never known anyone who's had it, so I'm happy to have Demi on the blog to talk about her journey.
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What type of lupus do you have?
I have Lupus Nephritis, meaning my form of Lupus mostly attacks my kidneys. Still caused by systemic lupus erythematosus (SLE)
How did you feel when you were diagnosed with lupus?
I had no knowledge of what Lupus was, but I remember thinking "at least it's not cancer or something." Google searches made it seem like I was going to die sooner rather than later, and worried I would be leaving behind my husband and daughter. The unpredictability of Lupus worried me more than anything. I constantly wondered what I had done to deserve this diagnosis.
What does having lupus feel like?
The best way to explain how Lupus feels (on it’s worse day-- known as a flare) is like having the flu and being made to run a marathon. You’re easily exhausted. Everything aches. In my case, as time has gone on, I have learned how to tolerate the muscle aches and can usually keep going through the day/motions will the help of a nap and not having a ton of errands or activities planned.
How does lupus affect your day to day life?
The first months after being diagnosed, I struggled with the bare minimum. Once easy tasks like showering, doing my hair, carrying the laundry basket now left me winded. As time has passed, and with the help of medication, I am able to do things similar to how I did before diagnosis. There are still some days where it takes everything out of me, but I have mostly adjusted and am able to continue to go about life normally. The only major factors that I deal with is sensitivity to weather changes-- cold/ and or rain leaves me sore and achy, and photo-sensitivity to the sun.
What is your experience with lupus treatments?
Compared to others with Lupus, my treatments are on the less extreme side and only included prescribed medication. Steroids such as prednisone, immunosuppressants such as CellCept, diuretics and blood pressure medicines were all I’ve had to deal with for the majority of my diagnosis. I have only been hospitalized once, and it was due to my body starting to reject the high doses of medicine. Aside from that, however, I have done well with my prescribed medications and have since been able to be lowered on doses all around.
Do you have any other details about lupus to add?
I would like to make it known that no two people with Lupus experience it the same way. There is also not one test to take that will tell you if you have Lupus. It’s mostly done through blood work, and sometimes the levels don’t register and sometimes, Lupus can mimic other illnesses. Also, Lupus does not discriminate. While women of color, especially in child-bearing ages, are more likely to be diagnosed, that does not mean that only women of color get Lupus. Lupus is also known to be hereditary but was not the case with myself, as I
am the only one in my family with Lupus, and it seems that the other people I have come across with Lupus, say they too are the only ones in their families. Currently, there is no cure for Lupus, just remission. Lastly, lupus is not contagious.
What are some stereotypes about lupus that irk you?
I have not come across many stereotypes other than "only black people get Lupus" but that is enough to irk anybody as Lupus does not discriminate.
What media portrays lupus inaccurately be it a movie, a book, or a TV show?
Unfortunately, media does not seem to portray Lupus. I have only come across maybe 3 characters that have had Lupus, one in a book and two in movies, and Lupus just appeared to be an additional characteristic of the characters. Not the focal point. It is worth noting that all of these characters did die in the end, and that isn't always the case, especially with modern medicine.
What media portrays lupus accurately be it a movie, a book, or a TV show?
Unfortunately, the media does not seem to portray Lupus often if at all.
Who are your top three favorite characters who have struggled with lupus in books, movies, or shows?
While I have come across a handful of characters with Lupus, none were the main characters. They were minor characters provided during a flashback or something. "So-and-so's aunt's had Lupus and she later died." I would like to see more characters with Lupus in the future, especially as awareness continues to grow.
Thank you again, Demi, for your candidacy.
Are you interested in participating in this project? Shoot me an email at howellvictoriagrace(a)gmail.com.
Do you have any characters that have Lupus? Did this inspire you to write a character with this illness? Do you have or have had Lupus and you have further input? Feel free to share! Do you have any questions for Demi? Be sure to thank her!
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