What’s it really like to live with chronic illness every day? How do you deal with the physical symptoms, emotional turmoil and practical problems? In this interview series, real life ‘spoonies’ share their experiences and tips.
Jameisha Prescod is the founder of You Look Okay To Me, the online platform for pain and chronic illness. The platform explores the links between chronic illness and tech, art and culture through the creation of short documentaries, podcast episodes, animation and online articles.
Tell us a little about yourself.
My name is Jameisha Prescod. I’m 22 years old from London. I am a documentary filmmaker/editor and founder of an online platform for pain and chronic illness called You Look Okay To Me. I recently graduated university in Digital Film Production. I was diagnosed with Systemic Lupus Erythematosus and later with Femoroacetabular Impingement, Migraines and Arthritis.
When did you first get sick?
I think I’ve been sick since I was young child (maybe 8). But I was officially diagnosed in 2014.
In what ways does having lupus affect your daily life?
Lupus has robbed me of my energy! I am tired all the time and it stops me from being as productive as I would like. I am in pain everyday. It’s something I have now gotten used to, but it’s still hard. I have realised I can’t do physical jobs anymore which impacts me a lot. It makes it hard to earn money and support myself.
How do you handle everyday practical problems?
I either ask for help or take well timed breaks and naps.
Do you have any tips on coping with symptoms? Is there anything you can do to prevent flare-ups or worsening of your condition?
There is nothing I can really do apart from rest. I used to push through the pain but this would only make things worse. Now I am more honest with myself and my condition. Giving myself time to heal is better for me in the long run.
Being chronically ill comes with a lot of psychological challenges. How do you deal with the emotional and social side of having lupus?
I don’t deal with it if I’m completely honest. This is something I still struggle with and still have to figure out. It’s difficult for me to accept I may never return to the person I was in the past. That’s really tough for me. I’m in the process of learning how to deal with this.
How do you keep joy in your life on a day-to-day basis?
I find joy in the projects I create. Using my skills to make content I am proud of. I also find joy in doing new things and saying yes more often. Spending time with friends and family is another way I keep joy in my life.
What would you like to tell others who are diagnosed with lupus?
Take care of yourself. Be patient with yourself. Create a strong community of family, friends and other patients around you for support. There will be times that you’ll really need it.
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