We have created a month for lupus awareness but I continue to bring awareness because this is everyday for me.
From lupus to creating her own “lupeholes”, author and advocate Aleathea Dijon, is captivating audiences everywhere with her book, Lupehole. Read more about Dijon and her journey, her strength as well as courage below.
How has being diagnosed with lupus changed your life?
Tremendously. In and out of the hospital to not living a normal life, I was taking 30 pills a day. After being diagnosed I went through a divorce and financial hardships, I had to start depending on other people. I am a very independent person, so it was overwhelming.
In the early stages of your diagnosis, what were some things you wish you would have known?
The number one thing for me before diagnosis was the journey of self-love, that’s not something that can really be taught. It can be instilled in you but you still have to experience it on your own. With different medicines, I gained a lot of weight and lost a lot of weight, I was on chemotherapy at one point. You don’t want to look at yourself in the mirror but the woman I see today I absolutely love. From an emotional standpoint with your life turning upside down you have some stability in who you are and integrity there’s not too much that can really shift how you feel about yourself.
What is a common misconception or misunderstanding about lupus?
The number one thing they’ll say, “you don’t look sick”, when I was first diagnosed I would say “well tell my lungs that and my heart that”. It’s a lot of things that are internal and sometimes you’ll see people’s rashes and things like that but won’t think anything of it. I think that’s the number one misconception that people think, “oh, since they have lupus there’s nothing really wrong with them because they don’t have a physical symptom of it”, they can’t really see it, and they don’t understand it.
What are some tips you have for others being diagnosed with lupus?
Number one, self-love and self-care. I do different regiments throughout the week to keep my body activate, keep my body energetic. You have to keep going and keep pushing. There’s different essential oils I use now and different natural things. I definitely do thorough research on what I’m putting in and on my body. Especially it being summertime right now, I definitely stress people that have any type of autoimmune disease involving their skin wear a protective layer of clothing or at least have on some type of sunscreen. You’re almost [like] a baby, you have to really protect yourself at every angle.
In what ways can we get communities involved in continuing to educate about lupus?
The Lupus Foundation has a chapter here in Georgia (the largest chapter) and with their statistics it’s shown that over 50,000 people are diagnosed in the state of Georgia. There’s a support group called, YAWL (Young Adults with Lupus) and they’re awesome.
What inspired you to write Lupehole?
I needed a way out of lupus and so trying to find that “lupehole”, I found six other ones. Like any good attorney knows, if you find a loophole, you can find a way out of that contract. When I signed the paperwork, it was as if my doctor gave me a life threatening contract, [said] “sign this” and I signed it not knowing all the details. Once I accepted I had lupus, I need to figure things out. I need to get out because I can’t live my life being sick every single day. This year I was told I’m in remission and now that I have used certain tools to get to remission, I am out here trying to help other people to live a healthier lifestyle. My eating habits, my sleeping schedule, my stress level, I was able to control that and I started working on it. I think that’s what inspired me to write Lupehole to just let people know there’s always a way out.
What events are held that raise awareness about lupus?
Yes, on August 12th, there is an educational seminar, Lupus 101: Understanding Lupus held by The Lupus Foundation of America (GA chapter) in Decatur, GA. Then if you go to the lupus website, lupus.org, they’ll always put up symposiums and educational resources throughout the month to attend, especially if someone is recently diagnosed and they just don’t know where to go, that’s always a good resource.
What do you hope will happen for the future of lupus awareness?
Lupus affects mainly African American women, we have the highest fatality rate, and I want to see that decrease. A lot of times they say that someone dies from lupus complications and they don’t really have a specific reason. Or they committed suicide because it’s so hard to deal with. For instance, if they know someone has an autoimmune disease that will affect them emotionally, pair them with someone in the behavior health field or mental health field industry.
What projects do you have coming up?
I am doing my book signings to bring awareness; I am working with the CDC right now to open up a new program for the support group giving educational resources as well as practical resources.