This woman's story is the story of all people with Ehlers-Danlos syndrome.
Most people with Ehlers-Danlos syndrome do have heart defects like she does, I myself have a hole in my heart along with four other heart defects.
Most people with Ehlers-Danlos syndrome have to give up activities and social events, I myself have to sit out many times when my friends gather.
Most people with Ehlers-Danlos syndrome cannot do what they used to anymore, I myself can no longer play the piano or play my saxophone as it hurts my hands and arms and back too much to sit with my instruments, this is very sad to me as my music was a way to express my feelings and to worship God with the talents he gave me, I myself can no longer hold a book to read, it hurts my hands they cramp and sometimes my wrists dislocate or a finger will dislocate while holding the book. My favorite book of all I can no longer hold which is my Bible so I don't carry it to church with me when I feel well enough to attend, I take an electronic Bible.
Most people with Ehlers-Danlos syndrome are not believed, I myself was told that it's just growing pains you will get over it or everybody hurts now and then, or it is impossible for someone to hurt that much, no one understands the pain that we are really in.
Most people with Ehlers-Danlos syndrome go to many doctors and spend a large portion of their life never knowing what's wrong with them, I myself see over 19 doctors and that's because all the doctors specialize in just one thing, and I was not diagnosed until I was 44 years old. Once you receive the diagnosis of Ehlers-Danlos syndrome you have to have every body part checked, every organ checked, because our collagen is weak, it's possible to die from what would be a simple problem for most people if it's not taken care of. Once diagnosed you also find out if there are many other diseases that you have because of Ehlers-Danlos syndrome.
Most people with Ehlers-Danlos syndrome are very sick even though they look just fine, I myself am very sick and some days I cannot even take care of my basic needs although I look perfectly healthy. But if you really pay attention you can see the fatigue on my face, my red cheeks from poor blood circulation, or a fever, the straining, and caution with my movements.
Most people with Ehlers-Danlos syndrome have to go to the emergency room often, I myself sometimes have to go several times a month and then there are times when I might not go for a month or two. For us, it is very frustrating to go to the ER because many of the doctors that you see in the ER don't know what Ehlers-Danlos is and you are treated as if you are a freak or someone just looking for attention.
Most people with Ehlers-Danlos syndrome are often abandoned by their friends and forgotten about, I myself have some relationships that have suffered because very few of my friends have researched or ask me what Ehlers-Danlos is. Because I don't have a disease that people know about others are uncomfortable talking about it, they don't know what to expect from my disease or how to support me. I can think of many ways to help me.
Most people with Ehlers-Danlos syndrome are afraid of the future, I myself am afraid that I will be left alone since I have no husband or children. I myself am afraid of how I'm going to take care of myself, I'm afraid that I will lose the ability to walk as I have already lost the ability to cook and clean like I want to.
Most people with Ehlers-Danlos syndrome have anxiety and depression, I myself have lots of depression and I often feel suicidal because I am afraid of my future and my pain on most days is just too much to handle, and I have lots of anxiety about what's going to happen to me and also if what I'm doing is going to dislocated joints and cause more pain. Sometimes I have anxiety about going to the doctor's appointments alone and understanding everything they tell me if they're even going to know what's wrong with me in the first place.
Most people with Ehlers-Danlos syndrome have chronic fatigue, I myself have chronic fatigue, there are days when I cannot wake up no matter what, and then there are days that I'm so exhausted that I cannot go to sleep because my pain is too great to rest.
Most people with Ehlers-Danlos syndrome just need someone to understand, I myself need someone to understand that I cannot stop thinking about Ehlers-Danlos syndrome as it affects every single second of my life no matter what I'm doing I am in constant pain, there is never a break from pain, I need someone to understand that I need to sometimes talk about what is going on with me and my body, and that I need to talk about my fears and my concerns, and I need someone to understand that I'm not being negative when I'm depressed and I'm not being negative when I talk about my health issues. I need someone to understand that even though my voice sounds happy or my voice sounds like I feel good that I really don't feel good, but I can still feel happy and not feel good. I need someone to understand that I can't change my disease or how I'm feeling by suggestions that are made to better my health, I have tried lots and lots of things and believe me if those things helped I would be doing them. I need someone to understand that I don't need to be fixed but instead I need someone to say I'm sorry this is happening to you and I'll pray for you.