Ehlers Danlos Syndrome is such a cruel disorder. It takes away so much from those that have it. Our bodies turn against us in so many ways. Most of us live in a world where our friends and family never really know what we are experiencing. We learn to hide our pain with smiles, and laughter as a way of coping as well as out of fear. We live in fear of being judged by others, of being considered hypochondriacs, or just one who complains too often. Fear is out constant companion, we fear the pain getting worse, another dislocation, and we fear one day we might require a wheelchair. How do you tell the people in your life what your body is doing to you? I often think it impossible to fully put into words. How do you burden the people you care about with such things? I doubt it would be worth it in the end.
I don’t remember a time in my life where pain was not there with me. I don’t remember inviting pain along, but he sure doesn’t seem to want to piss off. It’s here with me, through thick, and thin. How exactly do you explain that to someone? Do you even want to? What exactly do you expect a friend, or family member to do with that information? That part of an invisible illness weighs so heavy on your shoulders. You just never know what someone is going to do with that information. It doesn’t help when past experiences (which I have mentioned on an earlier post) have had lasting negative effects. It’s very difficult for others to know what words, what statements they might make to a friend, or lover that can have a lasting, negative effect.
So here you are with a body that just ain’t right, that never cooperates. A person that suffers from pain that is with them every day, pain that would drive most to drugs, alcohol, or worse. You learn to hide it, you learn to genuinely smile despite the pain, you even learn to laugh. You become amazingly adept at hiding your pain that doing so is second nature. Pain no longer lingers on your face, in your voice; it hides below the surface, silently torturing you. You’ve learned to blend in with the norm, appear to be status quo. You’re not, but you’ve learned that it’s just better to appear that way.
Now I’m going to go ahead and mention that I hate the standard pain scale. The thing is so freaking objective that it’s worthless. Then you take a chronic pain patient that has learned to hide their pain, and well we are just screwed. No doctor believes you when you say your pain is at a 7 today unless you look like a crack whore who just had her baby taken by social services. It just isn’t going to happen. I know the look, I get it every flipping time some jack wad asks me that question. And I’m sitting there, half wanting to scream “Look, I know you have your perfect picture drawn of what the face of someone reporting a 7 on a pain scale should look like and I’m here to tell you that little picture isn’t doing you any good with me. On a good day my pain trots in at a 5 or 6, that’s a good day. I’m too damn vain to run around life scrunching my face up, making wrinkles that won’t go away. I’m not going to cry in front of you either because it’ll screw up my makeup, or give me a headache. I’ve been living with pain since I was a child, A CHILD. And I’ve heard my whole life; don’t make faces they’ll stay that way. No one likes to look at an ugly face, and about 700 other things. No one cares that you’re in pain, they just want you to stop making faces, and shut up. So that’s what I did, and I’m telling you that MY PAIN IS AT A FLIPPING 7 TODAY” Instead I shrug, and let it go. So, I’m not going to tell you that I think about what scale my pain is on, I have four levels in my pain scale: Functioning, Barely Functioning, Not Functioning So Well, and I Would Cut Off My Finger To Make This Pain Go Away. Thems the breaks, and I have to go on with my life no matter how bad the pain is that day.
Here we are at the doctor’s office now. This is who you go to when you don’t feel well, doctors are supposed to heal us, to make us feel better. However, when you have HEDS going to the doctor is a whole different experience. There is no cure for HEDS, so they can never heal us. Many doctors don’t know enough about EDS to even help us appropriately manage our condition. One doctor recently told me that “You need to learn to live with this bothersome, non-life threatening condition”. Bothersome? BOTHERSOME? Bothersome is a hang nail pal, HEDS is way past bothersome. Yet, here I sit with all this information, all these ways that my disease can be managed and I’ve yet to find a doctor willing to listen. Sometimes you think you’ve gotten lucky, you’ve found a doctor that seems like they might be willing to listen. Given time, you might be able to develop a level of trust, a doctor / patient relationship that might grow to be beneficial. Then you realize their staff is astoundingly incompetent, that or they just don’t care. In my travels
I have yet to find a doctor that I feel is helping me manage my pain as well as it could. I haven’t given up hope yet. I’m just not there.
For now, I will do what I always do. I live with my pain, my constant companion. I try to prevent further injury; I do what I can to take care of myself. And for now, I don’t give up.