Jameisha created the fantastic chronic illness account @YouLookOkayToMe, a digital space for people living with a chronic illness. She also posts weekly videos and has a BRILLIANT YouTube channel.
I’ve been following Jameisha for a while and she continues to inspire me daily with her gorgeous photos and insightful posts.
So, lets get to know Jameisha!
WHAT IS YOUR CHRONIC ILLNESS AND HOW DID YOU GET YOUR DIAGNOSIS?
My main chronic illness that impacts my life is lupus (SLE). I was diagnosed in 2014, a few days after I started university.
In my teens, I started to experience symptoms of fatigue, joint pain and muscle aches. At first, I thought it was due to my poor lifestyle habits, but as the years went on things got worse and worse. I had my first proper flare at 17 and realized something wasn’t right.
I went through the process of trying to get referred and taken seriously, but it felt like at every stage, no one believed me. They told me I was ‘growing’ or that it was a vitamin D deficiency. Even after a referral, they told me that it wasn’t lupus that was causing my symptoms, but depression instead. I spent a lot of time second-guessing myself. Doubting if what I was going through was real. Eventually, I was referred a lupus professor who diagnosed me by saying “well, of course, it’s lupus.”
What was your initial reaction to hearing your diagnosis?
My first reaction was joy. I was over the moon. It took so long to get diagnosed so to finally get answers, it felt amazing.
After the initial joy faded it turned into feelings of grief. I lost the life I thought I was going to have so it became quite difficult. It felt like no one understood what I was going through. I was quite lonely and depressed at times.
How much did you know about your chronic illness before you were diagnosed? What was your initial reaction?
The only thing I knew about my chronic illness was that a contestant on America’s Next Top Model had it. Literally that was it. I knew she dealt with hair loss, which initially made me think I didn’t have lupus because that’s not a symptom I experienced.
What is one thing you’ve learnt from being chronically ill?
I’d say the main thing I’ve learned is being more in tune with my body and trying to respond to it accordingly.
Previously I would ignore the signals my body would give me when I was struggling. I tried to power on, which would make me sicker.
Now I’m a lot better at asking for help, slowing down and trying to be nice to myself. It’s still a work in progress though.
How did you make the decision to openly discuss your diagnosis and journey being chronically ill? Was it an easy decision to make?
I made the decision to openly discuss my journey at the end of my first year at university. I was frustrated that I wasn’t able to practice my film degree in the same way my peers could.
I decided to come up with a project that would allow me to be creative but also educate people. At first, I wanted to be completely detached from the project. I know most people don’t believe me, but I actually hate being on camera.
With time I realized I can’t expect people to share their stories with me if I’m not willing to share my own. With time I became a bit more comfortable, but to be honest, I still have trouble watching my videos back. But knowing that it may make someone feel less alone in their feelings proves that I’ve made the right decision.
How has being chronically ill affected your life? Have you made major changes?
The major changes are both physical and mental.
Physically, I’m not as active as I used to be which breaks my heart. Fitness was a strong passion of mine, and I continuously work to get to a place where I can still be active while managing lupus.
Mentally…I mean, I would never want a chronic illness, but it’s been a bit of a blessing in disguise for my mental health. I don’t think I would have ever addressed my depression and anxiety if it wasn’t for lupus.
Before lupus, I wasn’t kind to myself. Now I’ve been able to respond better whenever depression or anxiety creeps in.
If you could give one piece of advice to someone who has been newly diagnosed, what would you tell them?
It’s okay to grieve. Your life may look a little different now that you have a diagnosis, but that’s okay. A different life doesn’t mean a bad one. However, at the same time, it’s totally okay to be sad and grieve. A chronic illness is a major thing. Diagnosis is a major thing. Honour your feelings. Don’t dismiss them.
Do you think your physical health has impacted your mental health? Have you ever sought help for it and do you have any coping mechanisms?
My physical and mental health are definitely connected. Sometimes I don’t know which one influences the other.
Before a flare I always start to have a period of low mood out of nowhere. A few days later, a flare hits. Then when the flare hits, I start feeling sad and helpless because I’m ill. It’s a cycle!
I’m still in the process of figuring out the coping mechanisms that work for me. I’ve been trying CBT which has been okay. It’s also as simple as slapping on a romance anime series, or having a long chat with a friend.
What do you wish your friends and family knew/understood about your illness/disability?
I wish they knew how much pain can change your personality. I become quite cranky and mean when I’m ill. I hate that because I sometimes take it out on people who don’t deserve it. I don’t mean to, but it’s hard when your joints are hurting so bad you want to throw up. They’re very understanding. I just hope they know I appreciate their patience.
Finally, what does chronically living mean to you? Do you have any advice for readers going through similar things?
Chronically living means exactly what it says. To live while chronically ill, however that means to you. We all have different ways to manage. I don’t think there’s one correct way to navigate this strange thing we call life (especially while living with a long-term condition).
Advice I would give is to listen to your body. I know that’s quite cliché but it’s still important. I think it’s essential not to see your body as an opponent. I used to see it as something that was working against me, but now I look at is as a friend that needs love and care. Ultimately that love, care and patience I try to offer my body transfers to me as a whole being, both physically and mentally.
A massive thank you to Jameisha for sharing her story. Make sure you check out her instagram and Youtube channel. If you want to take part in the spoonie diaries, email me hello@ktmy.co.uk.
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