In honor of Rare Disease Day, I figured I would write a post to try to help explain what it is Ehlers Danlos Syndrome really is.
The best way I can explain my body is by describing what my mornings look like. When I woke up this morning my entire body was in pain. Last night was restless, like always, and getting my body to relax was no easy task. My head is pounding and it's hard to motivate myself to get my body moving. Sometimes I like to explain it as I feel like I was hit by a truck (although that might be a tad dramatic). As I try to standup my whole body aches. My legs are a wobbly and I feel slightly dizzy. I go to brush my teeth and my hands and fingers feel stiff and sore. I open my pill box and take my few medicines for the day and pray that my body stays like this, rather than get worse. This is a small and mild snapshot into the life of having a chronic pain disorder.
Ehlers Danlos Syndrome (EDS) is a rare, genetic, connective tissue disorder thats due to lack of collagen in the body. Collagen is what holds your joints together, so if you don't have a sufficient amount, your joints are weak and lose. This causes you to be prone to injury and to have chronic pain.
While chronic pain is a big part of EDS, in my experience, EDS has affected my entire body. My doctor likes to explain me as my "central nervous system being out of whack." I suffer from stomach issues, throat issues, head issues, etc. Getting even a small common cold can keep me down for days. EDS is completely random, never warning you when you may have issues and with what part of your body. Sometimes I have good months, sometimes good weeks, and sometimes good days, but somehow something always sneaks up on me. There are many different types of EDS, and from what doctors have told me I'm a crossover mostly between classical and the hyper mobility type.
My biggest struggle with having EDS has been the fact that it is an invisible disease. I may look fine or seem fine on the outside, but it doesn't mean that I'm not in pain or that I don't feel well. Days like today, that help me share awareness about my disease, are days I don't want to take for granted. While rare, my disorder affects many people, and being understood and even getting diagnosed isn't always the easiest task.
I thank God that I was diagnosed when I was 14 and could take the measures I needed so that I may prevent certain damage to my body and could learn how to best handle my situation. Many people go their whole life without getting diagnosed, causing them to be misunderstood, labeled as hypochondriacs, and causing them to badly damage their joints. It is extremely hard to live with an invisible disease, because while you want people to know what's going on and how you feel, you don't want to complain or seem like a baby. And even when you do explain, it's hard for people to understand.
I think the biggest thing that God has taught me through having EDS, is something we all struggle with. While someone else may not have been diagnosed with my invisible disease, we all have them, invisible diseases. Whether it's a mental disorder like anxiety, or struggling to feel like you fit in, or even feeling unloved and lost, we all have an invisible disease inside of us that no one else can see. I think knowing this I have felt called to share my story. So often we judge people, we label them, we criticize them, yet we don't even know what's truly going on inside. If you're a person who thinks it's impossible for someone to hide things without showing any signs on the outside, then I'm here to tell you that I think you're wrong.
If you read this post, I ask a few things of you. Please try to have compassion towards others. Please do not judge someone from their outside appearance. And please pray for the community of people who have yet to be diagnosed with EDS or another rare illness, because those people are suffering and don't understand why.
As hard as having EDS is for me, I wouldn't change my life. God has revealed Himself to me in crazy ways, and experiencing His healing power has made me a stronger, more trusting person. I have learned how to deal with my anxiety through my health issues, and I have learned what it looks like to truly care for others despite what is going on inside.
Happy rare disease day! I can only hope that this post can a little glimpse of what Ehlers Danlos Syndrome is so that we as people can be more aware, more proactive, and more understanding.
The best way I can explain my body is by describing what my mornings look like. When I woke up this morning my entire body was in pain. Last night was restless, like always, and getting my body to relax was no easy task. My head is pounding and it's hard to motivate myself to get my body moving. Sometimes I like to explain it as I feel like I was hit by a truck (although that might be a tad dramatic). As I try to standup my whole body aches. My legs are a wobbly and I feel slightly dizzy. I go to brush my teeth and my hands and fingers feel stiff and sore. I open my pill box and take my few medicines for the day and pray that my body stays like this, rather than get worse. This is a small and mild snapshot into the life of having a chronic pain disorder.
Ehlers Danlos Syndrome (EDS) is a rare, genetic, connective tissue disorder thats due to lack of collagen in the body. Collagen is what holds your joints together, so if you don't have a sufficient amount, your joints are weak and lose. This causes you to be prone to injury and to have chronic pain.
While chronic pain is a big part of EDS, in my experience, EDS has affected my entire body. My doctor likes to explain me as my "central nervous system being out of whack." I suffer from stomach issues, throat issues, head issues, etc. Getting even a small common cold can keep me down for days. EDS is completely random, never warning you when you may have issues and with what part of your body. Sometimes I have good months, sometimes good weeks, and sometimes good days, but somehow something always sneaks up on me. There are many different types of EDS, and from what doctors have told me I'm a crossover mostly between classical and the hyper mobility type.
My biggest struggle with having EDS has been the fact that it is an invisible disease. I may look fine or seem fine on the outside, but it doesn't mean that I'm not in pain or that I don't feel well. Days like today, that help me share awareness about my disease, are days I don't want to take for granted. While rare, my disorder affects many people, and being understood and even getting diagnosed isn't always the easiest task.
I thank God that I was diagnosed when I was 14 and could take the measures I needed so that I may prevent certain damage to my body and could learn how to best handle my situation. Many people go their whole life without getting diagnosed, causing them to be misunderstood, labeled as hypochondriacs, and causing them to badly damage their joints. It is extremely hard to live with an invisible disease, because while you want people to know what's going on and how you feel, you don't want to complain or seem like a baby. And even when you do explain, it's hard for people to understand.
I think the biggest thing that God has taught me through having EDS, is something we all struggle with. While someone else may not have been diagnosed with my invisible disease, we all have them, invisible diseases. Whether it's a mental disorder like anxiety, or struggling to feel like you fit in, or even feeling unloved and lost, we all have an invisible disease inside of us that no one else can see. I think knowing this I have felt called to share my story. So often we judge people, we label them, we criticize them, yet we don't even know what's truly going on inside. If you're a person who thinks it's impossible for someone to hide things without showing any signs on the outside, then I'm here to tell you that I think you're wrong.
If you read this post, I ask a few things of you. Please try to have compassion towards others. Please do not judge someone from their outside appearance. And please pray for the community of people who have yet to be diagnosed with EDS or another rare illness, because those people are suffering and don't understand why.
As hard as having EDS is for me, I wouldn't change my life. God has revealed Himself to me in crazy ways, and experiencing His healing power has made me a stronger, more trusting person. I have learned how to deal with my anxiety through my health issues, and I have learned what it looks like to truly care for others despite what is going on inside.
Happy rare disease day! I can only hope that this post can a little glimpse of what Ehlers Danlos Syndrome is so that we as people can be more aware, more proactive, and more understanding.