Life with a chronic illness
Updated: Jan 5, 2021
You know the super common saying, "Don't judge a book by its cover"? Well, meet Shayla. She's young, beautiful, and just like Queen Bey- she reigns from Houston, Texas. Her book cover says she's your typical 20-something-year-old girl who loves hanging out and having a good time. However, much more lies within her pages.
Shayla has Ehlers Danlos Syndrome (EDS), which is a connective tissue disorder that affects the joints in the body. Having had 12 surgeries at just 23-years-old, dealing with constant pain and the anxiety of what she calls "her body trying not to fall apart" it's an understatement to say that she goes through quite a lot. And yet, she still manages to keep going.
I had the chance to sit down and talk with her about having a chronic illness and how it affects the state of her mental health. Shayla opens up about how she has learned to cope, her moments of despair, and her strong faith in God as she continues to take life with a chronic illness one day at a time. I hope her resilience and strength inspire you!
When did you first start to realize that your mental health was being affected by your EDS diagnosis?
When college started. I wasn’t at home, so I didn't have my mom there on days when I’m not doing my best or telling me to rest when I’m doing too much which resulted in me pushing myself. My first year of college was when I had my first breakdown because it just became too much. I wasn’t feeling well (physically) but also I had so much to do and to worry about. I was by myself with my thoughts and that’s when it hit me, just trying to balance everything with my illness plus trying to make the adjustment to college. That’s when I knew it was going to be something difficult.
What are some misconceptions about having a chronic illness?
The first misconception is EDS specific, people look at me and I’m fine from the outside. I don’t have any visible ailments. Most chronic illnesses are invisible and people don’t understand that you have to look past someone’s outside appearance and understand that they’re actually going through something. Another misconception: people don’t understand that it can be up and down. If I make plans on a Monday I can feel fine and by Friday I don’t feel well anymore. I have had a lot of people in my life not understand that it’s not a constant thing, it’s up and down. I’ve learned to accept that it’s okay to say “no, I’m not okay to go” and not force myself to go out.
“Get better soon” what’s that mean to you when somebody tells you that?
When someone says “I hope you get better soon” it irritates me because a chronic illness is going to be in my life forever. It’s better to say “I hope you have a better day”.
What’s a good day look like? What’s a bad day look like?
On a good day, I'm not exhausted. I feel okay and I'm in an overall good mood with my pain level at a 6. On a bad day, I'm irritated and exhausted due to a lack of sleep and stress. I'm on edge, depressed, and angry at my situation.
How has the state of your mental health made you physically feel worse?
My body is already stressed because it’s basically trying not to fall apart, so when I’m stressed out (mentally) everything is amplified and it takes longer for me to get back to a good state physically. I’m constantly trying not to let the stress in my head consume me because when it gets me down, it really gets me down. I’m in bed for up to a week, so it’s just a domino effect when dealing with stress. When dealing with anxiety, I tense up a lot. When dealing with EDS, if your muscles are tight, that means it’s constricting your ligaments when they’re already loose. I’m constantly worrying about my body. Learning how to combat anxiety is hard, but it’s good to know how to do it because if not it’s just a domino effect. Knowing I can’t control EDS has helped me to accept what it is -there’s no cure- , it’s just the biological makeup of my body and I try not to dwell on it.
How do you cope?
Last year I started practicing mindfulness and meditation. It really helped me to put everything out of my head. I’ll stop and shut everything down just to regroup and make sure I don’t get back to that place [feeling down] because I can feel when it’s coming. But even sometimes, I lose the battle with myself but I’m at least trying to manage my mental health. I write because when I’m writing I can say whatever I want without having to worry about getting any feedback about how other people feel about how I should feel. I’m able to get everything out and that makes me feel better. A support group that I’m able to talk to people that are going through the same thing. It’s good to be able to talk to someone that truly understands where you’re coming from, knowing I’m not alone in my battle. I try not to put myself on a timeline by looking at what everyone else is doing. My friends and I started school at the same time and when they graduated/got their degree, I felt I should be finished too. I was looking at everyone else and trying to rush and finish because for me I set out to finish what I started. (another stressor to deal with)
What advice would you give someone recently diagnosed with EDS or a chronic illness and is in the midst of suffering mental health-wise?
You have to have a foundation with God, there has to be a relationship. For me, without God, there would be no way to get through this. He’s able to give you love, assurance, and a feeling of security even though the situation sucks.
Surround yourself with people who are supportive, who genuinely love and care about you. If you don’t, it will add more stress to you. Make sure that they’re people who are willing to learn and understand what you’re going through.
Get with a support group. Having people who understand and relate to what you’re going through makes it easier- not better, but easier.
Seeing a counselor or psychologist. I have one. You will have days when the anxiety is too much, my anxiety stems from worrying about the possibility of surgery due to subluxation (partial dislocation of a joint). It’s constant, the thoughts going over and over in my head. The anxiety gets high and the depression makes you feel so isolated and alone because nobody truly understands your situation so you really need a counselor because that’s someone you can talk to with an unbiased opinion who’s removed from your circle of life. They can give you tools and mechanisms to cope.
Listen to your body. If you don’t feel well, just be able to say no that way you don’t add more pressure to yourself. Don’t feel guilty for having to take a rest day or week.
How do you think being an advocate for EDS and speaking out about it will positively affect your mental health?
This is who I am and it’s a part of me. I want to bring awareness to it because nobody knows what it is and I feel like the more people know the more receptive they will be. They’ll be willing to learn more about it. It makes me feel better to talk about it. Also, it’s very rare in the African American community so I want to especially make other minorities comfortable with talking about it and being open. It’s put me in a more positive space bringing awareness to it [EDS] which helps my mental health.
*If you'd like to follow Shayla on social media, her IG is: shaylasymone*
Thanks for reading, and don't forget... Be great! xoxo.