Dear Ehlers-Danlos Syndrome,
Your name makes you seem like you're not a big deal. That's a false advertisement. You are a big deal. I remember back in 2015 when you were first mentioned. After years of searching for an answer, going from doctors to specialists, you would think that I'd be happy to have the solution to all my problems. All the "I can't sleep" nights where I would be wide awake until four in the morning. All the complaining to my parents that my hands hurt after writing one sentence on my homework. All the Advil and Tylenol I would take every day, but it was never enough to get rid of the consistent headaches that seemed to never leave.
You were a diagnosis, but you weren't the solution.
Ehlers-Danlos who? That's all I ever got from anyone and everyone. And that's including doctors and specialists.
Soon, I had to learn quickly how to recite a summary of you to explain to people. "It is a connective tissue disorder that makes my collagen faulty. Collagen is important because it fills up 80 percentof the body. It is what connects the bones, blood vessels, joints, muscles, arteries, and more. It's the glue of the body. My symptoms are of a wide range. They are different from day to day." I didn't even understand you fully until 2017. That's when you started taking the reins of my life. Suddenly, what I had dealt with in the past was a walk in the park.
As the years passed, I've noticed you slowly holding a grip on every part of my life. You decided that the chronic pain I dealt with daily wasn't enough. My friends went from people to my bed, pain medicine, and hot baths. The medications that were supposed to help us both only made us sicker. The days where I felt young and free began to decrease and the mornings I spent lying in bed for over an hour began to increase. You took over my body and made simple tasks and movements difficult. Getting out of bed or taking a shower began to feel like it was an obstacle in the Olympics. But you didn't stop there. You and the chronic pain that was your shadow began to keep me up at night again. So much so that a neurologist had to prescribe me a muscle relaxer to decrease the pain that was keeping me up at night. A side effect they don't mention is that it brings along a drug-induced dulling of the emotions. And with no one being able to understand, I turned to Pinterest which provided relatable posts that made me feel less alone.
I used to think there weren't enough hours in the day to complete everything that needed to be done. But you showed me that it wasn't the hours during the day, it was the amount of energy I had left from all the pain. You always made those hours as well as my energy decrease, but sometimes you would be generous and give me more (rarely though). You made my thoughts go from, "Do I have time for an hour at the gym today?" to "How can my body handle running on a treadmill if standing in the shower is difficult?" And the fact that you are different every single day doesn't help.
Why do you have to change when the weather changes?
Why do you have to have a tantrum when I get stressed or when I go out and have fun?
I'm 19, I should be out with my friends on a Friday night. Not sitting in a hot bath, trying to de-stress from schoolwork so you won't freak out.
And you always make me cancel plans at the last second. Do you know how many friends that has cost me? Oh, how I long to do the things I use to do. And how I envy the normal things people do. If I had to ask them one question, it'd be "What is it like to wake up in the morning and feel no pain?" And if a genie appeared in front of us and granted us one wish, most people would ask for love or money.
Not us. I'd wish for one day without pain.
You make me feel out of control because you control every part of my body. Does it feel nice to be in control? To be able to choose the days that you give me brain fog? To be able to take away my memories? Do you know what it's like to try and think back in the past but only for it to be a blank? Like it never happened? That's what got me into my passion for photography. I longed for the memories that you took and having pictures to look back at replaced them for me.
Talking about feeling out of control, why do you create problems throughout my body? It makes it so hard for specialists to diagnose me with something. Do you know how frustrating that is? You gave me these digestive issues that my gastroenterologist couldn't even figure out. We used to be able to go out and eat a good ass cheeseburger and fries. But now my body doesn't digest that correctly and my favorite foods are now my worst enemies. We can't have fried foods, dairy, pasta, bread, pancakes, soda, dessert, candy, chips, juice, high-fat foods.
Each day I find a new food item that you decide to not like. I had to change my entire lifestyle for you to try and make you happy. All my eating habits, how much water I was drinking each day, how much I needed to work out within the week. Do you know how hard it is to drink 90 ounces or more a day? I have to leave class at least three times to go pee. I use to walk and jog four miles every other day, but now I can barely walk one. Why don't I push myself? Well, would I rather get good exercise that will help my mental health and digestive system, BUT cause me more pain that disrupts my sleep at night and my pain levels throughout the rest of the week?
And not to mention, but why do you cause my stomach to blow up like a balloon? You know how long it took me back in middle school to learn to love myself no matter what size I was. And I worked my ass off and lost over 50 pounds, and it felt amazing. I went from a size 14 in jeans to a size 4! But you had to go and cause those digestive issues and my stomach to become bloated and inflamed so much so that the size 4 jeans wouldn't button.
And the stomach and adnominal pain that kept knocking at the front door forced its way in. I had to miss class! I had to miss out on life! When my sister announced her engagement to the entire family, we were in the bathroom trying to pull ourselves together because of the amount of pain you were causing me. When I went to class, I had to leave various times because the medication that was supposed to help us digest food correctly, only made us vomit it up. I got so tired of you, I stopped trying with my appearance. All I ever wore was leggings and a big T-shirt to cover up the once flat stomach that was now inflamed and bloated making me look like I was 6 months pregnant. You know how much it killed my self-esteem to wake up in the morning not see the flat stomach I worked my ass off for, but instead the painful inflamed stomach that replaced it? I had to relearn how to love myself. You made it so hard to create a healthy relationship with you.
I have so many reasons to hate you and throw a pity party, yet I chose to give you so many second chances.
But on top of this all, the worst thing about you is how you affect my loved ones. You can hurt me all you want, but when you start hurting the ones that I love, that's when I draw the line. Why do you think I act so strong and always have a smile? It's not just for myself, it's for them. They had to come to terms too that I am stuck with you, this lifelong illness that's only supposed to progressively get worse. My mom had to spend all those years with us, watching me cry from the pain you caused me. My younger sister had to convince me on so many days that my inflamed round stomach wasn't that noticeable, and I could pull off a crop top. My dad had to attend all these specialist appointments, where they resulted in a waste of money because they didn't know anything about you.
You are so unknown — no cure or treatments can be found. Why do you make it so hard to be found and get help? My little brother had to comfort me in bed and give me cuddles to help me through my tough days. My older sister had to listen to me rant countless times about how frustrated you make me. My friends always came and left because they undermined the power you had over me. They thought I was too young and too healthy to be dealing with this. But we didn't stop them from leaving. This is one of the things you taught me.
If they don't stick around for the hard times, then they aren't worth our time.
But the best thing about you is you're invisible (besides the bruises, cuts, dislocations you give me).
When people look at me, they don't see you.
They see me — someone who is constantly smiling and making everyone laugh. That's the part of me you will never take away. My radiant, positive personality, because that is who I am. You can take away my memories, the control I have over my body, my pain-less days (not that I have any anymore), the useable hours I have during the day. But when people look at me, they are going to see me. Not you. People's first impression of me is going to be about who I am as a person. Not about how you affect my daily life. Because when people find out about you down the road, they aren't going to think, "Damn, that sucks. I'm so sorry."
They are going to think, "She is fucking strong to be dealing with this illness, with this pain every single day of her life. To be dealing with pain levels that most people wouldn't be able to get out of bed with. She is fucking strong for not letting it take over her life. For not letting it hold her back, but instead embracing it as it's a part of her."
So, yeah, you may be a part of me and choose how I live my life each day. You may make my bad days worse, and my happy days tough. You may bring days where I can't get out of bed or become emotionless and hold me back from living the life I want to live. You may make life more difficult than it needs to be. And You may be invisible and make people undermine the pain I live in daily. But you make me strong. When people ask me why I don't give up, what makes me fight through each day knowing that the future is unknown. It's because this all happened for a reason. I had to go through and will continue to go through this with you for a reason.
Over the years, you have taught me educational lessons I needed to learn in life, you have given me experiences that make me emphasize and understand others more, you have made my heart bigger and warmer for those who are struggling, you have made me stronger than I was when I got first diagnosed. So, thank you for your presence in my life, even though you started off unwelcomed. Thank you for challenging me each day and making me find the positives.
Sincerely, the previous owner of our body.