I originally wrote this and posted it on Instagram and Facebook, but I don’t want it to become “lost.”  This was a bit difficult for me to write, as I don’t like being vulnerable to those I’m not close to. 

May is Ehlers Danlos Syndrome Awareness Month. I haven’t mentioned it because, well, my Ehlers Danlos has been making itself quite aware to me. Also, I don’t want people to think that I’m complaining and wanting sympathy. But since it’s EDS Awareness Month and I haven’t mentioned it yet, I feel like I should since most people aren’t aware of EDS unless it affects someone they know. These photos are EDS to me. Ehlers Danlos is neurosurgeries because my spine was so unstable that it was constantly subluxating and always at the risk of dislocating, which could have been catastrophic. It’s the fear that I need another surgery because so many symptoms are back. It’s daily subluxations of so many of my joints and frequent dislocations. Ehlers Danlos is strains, sprains, and swollen joints. It’s bruising, poorly healing scars, and skin that rips for little reason. It’s agonizing pain which causes me to wake up in the middle of the night, that’s if the pain even lets me even fall asleep. It’s that enlarged aortic root that’s in the back of my mind every time I get chest pains. It’s so many medications. It’s pill, after pill, after pill. It’s dealing with the comorbidites. For me, Ehlers Danlos is also Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation Syndrome. It’s maybe even Gastroparesis, but that’s still a “wait and see.” EDS is doctors appointments and having specialists in so many states. It’s so many doctors appointments. And, it’s expensive. I cannot stress enough about how expensive it is to have a chronic illness. It’s so incredibly expensive and one copay and medical bill after another. Medical debt is the worst, but what’s the alternative? Ehlers Danlos Syndrome is having days where the only place I can go is the couch. It’s having days where I can do some much more and walk around if I have my cane. I appreciate the people that understand that so much. It’s watching your Dad, Best Cousin/soul sister, and friends literally fall apart at the seams. It’s feeling like a burden to those that I love and love me, canceled plans, and worrying about being someone’s view of being a “leach to society” because I’m on disability and get Medicaid. I hate to even admit that I get those because of the stigma that comes with it. Ehlers Danlos Syndrome is spending both your husband’s birthday and your mom’s birthday in the hospital because of surgeries. I joke that my next one will be around my dad’s birthday. And, it’s spending our fourth anniversary hooked up to an IV but having my husband, the man of my dreams, drive two hours late at night, after working all day, so he can be with you. But Ehlers Danlos Syndrome has also been meeting some of the best people I’ve ever had the pleasure to know though the internet, both those with EDS and those with other chronic illnesses. They get me though the day. It’s strengthened my relationships with both my cousin and my dad. And, I think it’s made the relationships with other people that I love, especially my husband and mom even stronger. My mother-in-law, too. I can’t even begin to stress how amazing they are. Also, my friends. The friends that understand that sometimes I literally can’t and sometimes I can go on adventures. They’re so good. I’m so blessed. Ehlers Danlos Syndrome, and its comorbidities are difficult. But, what other choice is there but to fight on? Let’s keep fighting, ok?

May is Ehlers Danlos Syndrome Awareness Month. I haven’t mentioned it because, well, my Ehlers Danlos has been making itself quite aware to me. Also, I don’t want people to think that I’m complaining and wanting sympathy. But since it’s EDS Awareness Month and I haven’t mentioned it yet, I feel like I should since most people aren’t aware of EDS unless it affects someone they know. These photos are EDS to me. Ehlers Danlos is neurosurgeries because my spine was so unstable that it was constantly subluxating and always at the risk of dislocating, which could have been catastrophic. It’s the fear that I need another surgery because so many symptoms are back. It’s daily subluxations of so many of my joints and frequent dislocations. Ehlers Danlos is strains, sprains, and swollen joints. It’s bruising, poorly healing scars, and skin that rips for little reason. It’s agonizing pain which causes me to wake up in the middle of the night, that’s if the pain even lets me even fall asleep. It’s that enlarged aortic root that’s in the back of my mind every time I get chest pains. It’s so many medications. It’s pill, after pill, after pill. It’s dealing with the comorbidites. For me, Ehlers Danlos is also Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation Syndrome. It’s maybe even Gastroparesis, but that’s still a “wait and see.” EDS is doctors appointments and having specialists in so many states. It’s so many doctors appointments. And, it’s expensive. I cannot stress enough about how expensive it is to have a chronic illness. It’s so incredibly expensive and one copay and medical bill after another. Medical debt is the worst, but what’s the alternative? Ehlers Danlos Syndrome is having days where the only place I can go is the couch. It’s having days where I can do some much more and walk around if I have my cane. I appreciate the people that understand that so much. It’s watching your Dad, Best Cousin/soul sister, and friends literally fall apart at the seams. It’s feeling like a burden to those that I love and love me, canceled plans, and worrying about being someone’s view of being a “leach to society” because I’m on disability and get Medicaid. I hate to even admit that I get those because of the stigma that comes with it. Ehlers Danlos Syndrome is spending both your husband’s birthday and your mom’s birthday in the hospital because of surgeries. I joke that my next one will be around my dad’s birthday. And, it’s spending our fourth anniversary hooked up to an IV but having my husband, the man of my dreams, drive two hours late at night, after working all day, so he can be with you. But Ehlers Danlos Syndrome has also been meeting some of the best people I’ve ever had the pleasure to know though the internet, both those with EDS and those with other chronic illnesses. They get me though the day. It’s strengthened my relationships with both my cousin and my dad. And, I think it’s made the relationships with other people that I love, especially my husband and mom even stronger. My mother-in-law, too. I can’t even begin to stress how amazing they are. Also, my friends. The friends that understand that sometimes I literally can’t and sometimes I can go on adventures. They’re so good. I’m so blessed. Ehlers Danlos Syndrome, and its comorbidities are difficult. But, what other choice is there but to fight on? Let’s keep fighting, ok?