This blog post is part of “Beyond My Personal Battle”, an interview-based series dedicated to sharing the individual lives working to thrive beyond the diverse challenges of illness or disability.
What is your name and where you’re from? What is your diagnosis?
My name is Jameisha Prescod and I am from South London. I was diagnosed with SLE, or Systemic Lupus Erythematosus, in 2014.
Can you explain briefly what Lupus is?
Sure. Lupus is an autoimmune disease, so the immune system that is meant to be fighting viruses, like the common cold, attacks its own body instead. It can result in joint pain, fatigue, muscle aches, and cognitive dysfunction. For some people who have more serious cases of Lupus, it can cause organ damage or failure. I am categorized in the more moderate category, where my organs are not as affected, which is good, however I do suffer from quite a lot of pain and fatigue.
When did you find out that you had Lupus?
I found out in late 2014. That October I was officially diagnosed, right as I was about to start University. I was 19 years old. I actually had a preliminary diagnosis and then it was taken back, which turned into a whole debate whether I had Lupus or not. The whole process was about a year and a half before I was diagnosed.
What did you study? Did that present any challenges?
I graduated University in 2017 and am currently working. I studied digital film production, which doesn’t always go hand-in-hand when you’ve just been diagnosed with an autoimmune disease because it is quite a physical field. You’re often expected to go out to film, lift stuff, or stand around for long periods of time and that was really difficult for me. I wasn’t able to do that very often or it would leave me very tired. It was cool to study, but very difficult. I had to miss out on some things.
What was that like for you on an emotional level?
I actually started off feeling vindicated because I spent a lot of time fighting to get my diagnosis. So at first I felt really happy. But then as I was settling in I got really frustrated. I physically wasn’t able to do all the things everybody else was able to do.
I thought in my mind I could manage it. I was really determined. But there were some things I really couldn’t do. Like standing on set for sixteen hours. There were opportunities for internships or work experiences, and I just couldn’t go to them because I knew that I would probably be able to do the first day but [not] the next days. That affected my self-image because even though I knew I had a reason to be this way, there was this weird feeling I’m just being lazy or not trying hard enough. It’s weird, because you know it’s not true but you still think it.
Did you have a support system during this time?
I had some people who, straight off the bat, didn’t understand it but were supportive. There were other people who weren’t as understanding. I had one friend, for instance, who had just turned eighteen, which is the year in England you can start drinking and go clubbing, so they wanted to do that. At the time I couldn’t because I was going to University, I had this chronic illness, and I had a part time job. I was exhausted and in pain all the time, and it frustrated this particular person to the point where they stopped talking to me. So it was a mixture.
I didn’t really understand how I felt at that time, so it was quite hard to communicate to other people what was going on. Even though I was diagnosed, I still had to figure out what my potential triggers were. I didn’t know how to manage this disease at all. I didn’t understand it myself. These are the things you learn after diagnosis... what things work for you, what things don’t. Getting to know your body all over again and this new idea of having a chronic illness. It becomes difficult to express to other people.
Why do you think it’s difficult to communicate about chronic illness?
They can just be unpredictable. Sometimes you’re fine and sometimes you’re not. That is quite difficult to communicate to people. They’re looking at you one day thinking “oh yeah, she’s doing alright” and then another day I’m like, “look mate, sorry I can’t come out today.”
When did you start talking about it more openly?
I never had one moment, it was a gradual build up to wanting to share my journey. I originally went to University trying to be a cinematographer but realized it’s very physical. So I still wanted to demonstrate my skills somehow, but then also wanted to communicate how this illness Is affecting me. Also, realizing there was a bunch of people I was at school with that had similar illnesses, I thought it was good to combine creativity with educating people about something. Originally it was just going to be something really small. It wasn’t necessarily going to be me talking in front of the camera or me talking about my personal experience. It took a bit of time because when putting yourself out there like that there is this fear – especially when you have an illness that is seemingly invisible – that people are going to judge you.
How you are educating about chronic illness more specifically?
I like video and creating video content so it’s mainly in video form. I do have a blog, as well, and it welcomes guest writers. But the way I prefer to put information out there about chronic illness is [mostly] through video. That’s sort of my language.
Are your videos for others or are they a way to release your stress and convey your emotions?
I think it’s a bit of a mixture. I want to remind people they’re not alone. That, and if they hear someone like me say they have similar symptoms as them, it might encourage them to go to their doctor and get checked out. I think the mechanism of this is to create change. It’s not just for us to talk amongst ourselves. I think that’s important, but there needs to be a lot of change in society. Especially when it comes to places like school or work where it directly impacts our livelihood. If people are more educated in that regard, potentially from content like this, that would make a big change for people with long term conditions. I make videos for myself, as well. Sometimes making a video actually makes me more informed about certain subjects within chronic illnesses. So, it’s also a way of me learning more.
Aside from talking about it, what does your everyday stress management look like?
I feel it’s an ongoing process and it depends on how I feel. If I feel mentally stressed I find that repetitive activities help, so I knit or crochet. However, that’s not always possible physically because sometimes my fingers are a trigger point for my Lupus. So, it depends what my body needs. Either resting, watching stuff, sleeping, talking to some friends, or sometimes going out by myself, taking myself out to a museum. It really depends on my energy levels.
Content provided by BeyondMyBattle.com https://www.beyondmybattle.org/blog/jameisha-prescod