Living with Discoid Lupus
Last updated: March 2022
Discoid lupus can affect any person's emotional aspect of life. You ask yourself if you are beautiful enough; will you love yourself so others can love you? Will others be able to look past your appearance and notice the person you are inside? Will you be judged for having a disease that you have no control over?
Depression could play a big part in your feelings also. If you have a spouse, you might wonder if you are attractive enough. No woman or man should have to go through feeling as if they are not good enough – no matter what.
Will I forever be like this? Will I die from this? Is my life over?
So many things run through your head while going through skin lupus.
Discoid lupus management
Discoid lupus is an autoimmune disease that causes skin lesions all over the body. Sometimes it becomes worse when exposed to sunlight or any lighting that contains UV rays. When I was diagnosed with discoid lupus, I was going through kidney failure and also taking a variety of meds.
At first, I used to peel and scratch, and my skin would become red. I never thought it was a flare until my skin became so sensitive that it tore. Then, it would bleed. I would swear that when the wounds were open it felt like 3rd-degree burns. It felt as if something was eating away at my skin and I had no control of it. I would have flared up so bad to where you could see my tissue.
I had to start wearing gauze, but only ones that would not feel as if it were ripping my skin. It wasn’t cotton, because that would stick to the skin. When peeling, cotton will rip and make the skin bleed. It was something like the ones you use when you receive a tattoo. Placing the medicinal creams on it and using that cover helped me so much. I also started to bathe in Aveeno oatmeal and vitamin E. I would bathe with oatmeal soap because African black soap would burn an open wound. I would only bathe in lukewarm water because the heat can make it worse. Just imagine sometimes wearing clothes and everything sticks. It is very uncomfortable.
Lupus fluid retention
I also had fluid retention seeping through my skin. My vagina would swell, peel, and burn to the point I would have to sleep with a towel. I stopped using toilet tissue and started using non-scented flushable wipes. Then it got worse and blood clots started to erode out of my skin. First, my arm then my lips. I almost gave up but honestly, I did not. I thought it would get worse before it got better.
I changed my diet because acid and sodium would just dehydrate my body and that did not help my skin lesions at all. I drank water and started eating avocados and beans more. I cut off rice, sugars, and also beef. My life started to change drastically. I always kept my skin moisturized. I would rest as much as I needed, and wouldn’t go outside during peak heat hours which is typically 10-5 pm. I would cover up also, meaning, long sleeve shirts and wearing pants and hats.
I then started to notice my skin started to change and close. I noticed a difference. I started to heal. The more I rested and ate well, the better I got. I ate more veggies and fruits every day. Soon I didn’t even miss drinking sodas or eating junk food. I became a better person because I chose life and I wanted more for myself. Each day, I felt myself getting better and better. Now my lesions are closed but I still watch and take care of myself so I don’t have those issues anymore. Just put faith into your beliefs and it should show.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?