I have Hypermobile Ehlers-Danlos Syndrome. It makes my joints dislocate from the smallest motions. Other symptoms come with it, but those are my main problems. If you saw me, you wouldn’t be able to tell that I’m sick except for when I’m wearing slings. Chronic illnesses aren’t always apparent from the outside. Some people even think that I’m faking my illness because there are no visible signs besides when I have a dislocation. I think that is the hardest part of my health problems, the doubt people have. Yesterday I saw a post about how people think that we are faking our illnesses, but we are actually faking our wellness. Meaning, we pretend that we’re okay sometimes, because the pain is embarrassing and we don’t want to burden people with it.
Pain is difficult. Everyone has their own tolerance. While most people would feel a lot of pain from stubbing their toe or hitting their knee on something, I might not even notice it happening to me because I’m used to different pain. I’m used to coughing my shoulder out of socket. I’m used to putting too much weight on my leg to the point that my hip dislocates. I’ve had four shoulder surgeries in the past two years; three on my right shoulder and one on my left. I have cadaver tissue, screws, anchors, and other things in my shoulders. Now, every dislocation pulls all the hardware in my shoulders and sometimes stretches, rips, or moves them.
Most days, I’m in a lot of pain, but I won’t tell anyone. I won’t tell my mom, my doctors, or even my best friend. I know it causes my loved ones pain to know I’m hurting so much, so I fake it. I smile, I laugh, I go on with life, because I’m tired of being a burden. If I do talk about pain, I minimize it and make it sound nowhere near as bad as it truly is. I hate being dishonest and leaving out the truth, but I do it to protect people I love from pain. I’d rather carry the burden alone than burden others with the thought while still carry the physical pain alone.
The pain often makes me feel nauseous, which makes eating difficult. If I’m not feeling nauseous at the time, then I usually eat a lot because I know that later I won’t be able to eat because the pain will get worse.
I have to sleep on my back because if I lay on my sides my shoulders will dislocate and my hips get really sore. It’s hard to fall asleep while only being able to lay on my back. It’s hard to fall asleep while in so much pain. When I do fall asleep, I always wake up in the night from rolling onto my sides in my sleep. I either wake up from a dislocation or just pain from the weight being on my already painful shoulders. Once I wake up from pain, I usually can’t fall back asleep for a few hours at least.
Ever since my body has experienced these issues, I’ve had to give up many activities, dreams, and joys in my life. I was an archer. I loved biking, running, walking, and hiking. I loved climbing trees and sitting in them while reading. I loved tossing a football with my brother. I loved soccer and wished I could play on a team again. Now, I can’t even tie my shoes, cut my food, or brush my hair. I wanted to be a special ed teacher or coordinator. I wanted to be a personal care assistant. Now, I can’t help people physically and I need my own personal care assistant. My dreams were crushed. I nearly gave up on my future. I still struggle with it.
My mom has been my rock. She takes care of me and is pretty much my personal care assistant (bathes me, helps me use the restroom, and every other need). She has worked with people with disabilities and has a heart for them like I do. One thing that my mom has told me since I was little is, “People with with disabilities aren’t really ‘disabled’, they just have different abilities than other people.” This morning, I was telling my mom how upset I am that I can’t help people with disabilities. She said, “Well you have a mouth don’t you?” What she meant by that is that I have my words that can help.
I have read many blogs, social media posts, and books about people who have gone through medical or mental health struggles. Every blog, post, and book has helped me feel less alone in my struggle and has motivated me to keep going. If I can help just one person realize that there is hope, peace, and purpose in their struggles, then this is all worth it to me.
I’ve struggled with depression, anxiety, ptsd, and insomnia. Managing both mental illness and chronic illness has been very difficult, but they go hand-in-hand with each other(even though my mental health issues started first). Sometimes my depression and anxiety make it hard for me to get out of bed. Sometimes my pain makes it hard for me to get out of bed. On days where it is both I really struggle.
I never want to sound like I’m complaining about my medical and mental struggles, because I am grateful for them, but I hope that explaining my struggles could help others too. It may sound weird that I’m grateful for my chronic and mental illnesses, but I really am. I have become stronger mentally and spiritually. I have learned so much and have gotten a new perspective on life and my purpose.
I know now that my pain has meaning and purpose even though I might not always see it at the time. I have hope for my future even if my chronic illness continues to get worse. I have even more passion to help and love people than I did before. I have new hopes and dreams that still give me the opportunity to work in the same general area that I have always wanted to work in.
I hope to become a psychology professor (get my PhD). I want to be able to teach people about psychology and also advocate for mental health. I hope to get married and become a mom some day (although I’ll most likely have to adopt which I would love). I hope to finish my poetry book and get it published. I hope to possibly write a book or continue with this blog more. I hope to love the forgotten and lost. I hope to share the hope I have with every person I encounter.
My mental and medical struggles don’t get to control me or my dreams and future. They affect each area of my life, but they don’t get the control. My body is simply a vessel, not who I am.
He replied, “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.” -Matthew 17:20
Thank you for taking the time to read my blog, it means a lot to me. Feel free to message me, share this, or leave comments. I am open to talk to anyone about anything or pray for or with any of you, so don’t be afraid to contact me.
National Suicide Prevention Hotline: 1-800-273-8255