"You look okay to me" are words that will be all too familiar to people who live with systemic lupus erythematosus (SLE).
Better known as lupus, the condition is a long-term autoimmune disease that affects roughly 1 in every 1000 people in the UK and is thought to be nine times as prevalent in women than in men (Lupus UK). Although there's no cure, proper treatment can help control the symptoms.
One of those who lives with the condition is filmmaker and editor Jameisha Prescod. Like many people with so-called "invisible" illnesses, Jameisha grew frustrated at people not taking her chronic condition seriously and decided to create the online platform You Look Okay To Me in response.
Jameisha kindly took the time to speak to Echo about living with lupus, dealing with the symptoms and overcoming the stigma. Here's what she had to say.
What are the main symptoms of lupus?
I call them “the big three”, and that would be fatigue, joint pain and muscle pain. Those are the three that affect me on a day-to-day basis.
The fatigue will slow me down and make things really difficult. I get really tired easily, and sometimes I can’t do as many things in the day that other people can, if anything at all. Some days I have to stay completely in bed and rest up. And even when you’re resting you sometimes don’t really feel any better.
Muscle pain and joint pain are quite annoying because, once again, certain activities that you sometimes do can cause flare-ups in your joints or muscles. I used to work at a salad bar and even squeezing the dressing on the salad would cause terrible pain in my joints. That’s quite annoying.
There are also other symptoms. There’s brain fog which is another big one, which can cause memory loss and just general cognitive dysfunctions. It’s really frustrating, especially when you’re trying to get stuff done (or even read a book!). And then there’s sun sensitivity. I will get skin rashes on my arms or sometimes my back or face if I’m out in the sun too long. To be honest, the sun doesn’t even have to be out and I’ll sometimes just get a rash due to lupus.
One of the other symptoms is an add-on disease called Raynaud’s Disease. That means I have really bad circulation in my hands and my feet, and sometimes they will turn strange colours. My fingers will turn white or blue or a really bright yellow.
How does lupus affect your daily life?
The condition affects my daily life because it means that there are some things that I can’t do as easily. This could be walking, and I can’t walk as far distances as I used to. In general, I just get tired really easily: I could be at work or doing an activity with my friends and I just get very, very tired quite quickly and it’s very, very annoying.
It also can affect my mood, so in a flare-up, I can be really irritable. Too many sounds at the same time can just overwhelm me sometimes and once again I’ll find it hard to remember things. I’ll be having a conversation with someone and forget what I’m saying while I’m saying it. While I’m talking to them I’ll lose interest in what I’m saying. It’s kind of weird.
What’s the hardest thing about lupus?
I think the hardest thing is the lack of control. I like to be in control of my life and what I set out to do in the day. Lupus and other conditions don’t really have a schedule or a time limit—they just hit you when they want to hit you. Though you can plan certain things you want to do in the day, it doesn’t always go to plan because you can end up having a flare-up. I can have so many objectives in the day and not be able to achieve them because my lupus decided to flare up. This frustrates me the most because I like to get stuff done and unfortunately I’m not always able to. But I am learning to be easier on myself and know that there is always tomorrow.
What is the main misconception about lupus?
The main misconception about having my conditions is that I don’t have my conditions. Because of the conditions that I have, it’s not evident straight away to see that I’m not very well. What it means is that there are people who are outside of my immediate circle—sometimes they’re actually in my circle—that don’t know that I’m sick and assume that I’m absolutely fine.
As a 23-year-old woman, they think I can do certain things that I can’t. I should be able to take the stairs because I’m fine and I’m young, I should be able to walk that long distance, I should be able to stand for eight hours in a retail job. Unfortunately, a lot of the time—if not all the time—I’m not able to do these things. Because my illness is invisible, it’s not always apparent to people straight away and therefore they will have those misconceptions.
I came up with my blog title, You Look OK To Me, precisely for that reason. A lot of people with lupus or similarly invisible conditions like as MS (multiple sclerosis), arthritis or Crohn’s disease will hear this a lot. You hear people tell you that you’re fine and look fine. They wouldn’t assume that you’re sick and the frustration of hearing that all the time led me to create that blog with the name and allow space to share the experiences that myself and other people that have lived with long-term conditions have.
Are you surprised by how many people have engaged with your story?
I am actually really surprised by the amount of people that now interact and engage with me and my story. It’s really, really cool. It’s grown a lot within the last year and all these people within all these different countries that are talking about their illnesses and talking to me is a really, really cool thing to engage with. You can talk to friends and family, but if they don’t have illnesses they’re not always going to understand the type of things that you have to go through. It’s been a really cool experience to run these social media pages and then engage with this network of people online. It’s been amazing.
I think the project that has given me the most satisfaction for You Look Okay to Me is a short video of a minute and a half in which I explain, in very basic terms, what an autoimmune disease is. A lot of my friends have asked me what lupus is and how to describe it and I’ve always tried to come up with really easy ways for them to get it. And that was the premise of the video - coming up with a way for people to understand it. Lots of people with chronic illnesses liked it but a lot of people who didn’t have a chronic illness or any type of autoimmune disease were also able to understand. I had comments saying “oh my gosh—I get it now!” and that’s really great. It’s a great feeling to know that you’ve educated someone. It’s great to educate people and then maybe create a sense of empathy with them for other people with similar conditions.
What advice what you give to someone else with lupus?
One of the things I’ll say to someone with lupus or a similar condition is to be kind to yourself and be patient. You might have an objective of where you want to be and where you want your health to be but just be present. Give your body what it needs right now. Look for a support system—if that’s not your friends and family, some of us are online and we’re here.
Learning about lupus
Though awareness of lupus has become more widespread since a number of high-profile names such as Selena Gomez have been treated for the condition, it's still largely misunderstood.
For further information about lupus, the charities Lupus UK and the Lupus Trust are great resources for anyone affected by the condition, with a range of facts and figures as well as articles that provide helpful lifestyle advice.
If you'd like to learn more about the symptoms of lupus, the NHS page on lupus is another good resource.
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