The Face That Ehlers-Danlos Syndrome Gives Me

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.


Dear Drug Seekers,

Dear Drug Seekers,

I wanted to take the time to thank you for what you have managed to accomplish.  It really is somewhat of an amazing feat when you think about it.  You have managed as a group to have such an overwhelming effect on healthcare that impacts so many people in such a negative way, that I am certain there is now a special place in hell for all of you.

I know that alcoholism, and addiction is a disease.  I am more aware than most having lived with, and loved an alcoholic for a time in my life.  I have lost many friends to addiction, and have seen many battle it for years.  It is something that grips you, and does not want to let go. It destroys families, and lives.  I am more sympathetic than most to your disease.

However, I wish you could have kept your horrible disease out of doctor’s offices.  You see, I suffer from an invisible disease that brings with it chronic, and debilitating pain.  I look healthy, and to most I seem healthy.  Under my smiles, under my generally well presented façade is chronic, never relenting, ever present, pain.  I don’t know what it’s like to not be in pain, I don’t remember a time where I was not in pain.  I have been in pain every single day of my life since I was a child.

It used to be that when I needed it, a doctor would be happy to write me a prescription for pain medication.  I’ve never abused it; hell I’ve probably thrown out enough expired pain medications to cause an addict like you to have a total breakdown.  I only take them when I absolutely need them, when I’ve reached the point that suck starting my shotgun seems like a truly viable answer to my problem.

Now when I need pain medication it takes a god damned miracle to get it.  Doctors are fucking terrified to prescribe it, and the people who really need it are just as terrified to ask for it.  We don’t want to be labeled a drug seeker, that’s not who we are.  We are people who live in constant pain. We are people who need to have pain medications.  We are careful how we use them, and we only ask for them when we truly need them.  Thanks to your lot we now barely have access to the medicine that we need.

You are the reason I have lost so many precious hours of sleep, days where I am up for 36 hours or more.  Days on end where I am lucky to eek out a few joyous hours of sleep, 2-3 at the most.  You have made my life worse, you have taken joy from me, and you have in some cases taken my dignity from me.  I didn’t ask for this horrible disease that leaves me to suffer in endless pain.  I never did anything to you.  You have done irreparable harm to me, and so many others.  You’ve done harm to the medical system that I’m not sure can ever be repaired.  You’ve denied me the medications that ease the pain a little, that take the edge off enough that I can clean my house, go for a walk, take my dogs to the park, or meet my friends at a museum.  You can’t fix that; you can’t give me those hours of sleep back.  You can’t repay me the joy you’ve stolen.  You can’t go back in time and given me those days I couldn’t get out of bed back.

So figure it out, get clean, and do something, anything.  But, don’t you dare go to a doctor’s office to get your fix.  As an addict you’ve done enough damage to your loved ones, what the hell gives you the right to make the life of someone you’ve never even met worse?  Just who the hell do you think you are?  You are selfish, self-serving, lacking all forms of awareness of others.  You don’t even realize how far your hideous disease reaches, beyond your family, and friends.  No, it wasn’t enough for you to ruin the lives of the people that love you.  No, not you; you had to figure out a way to ruin the lives of people you never met, people who already suffer in silence every day.  So, again I say – there is a special place in hell for you my dear drug seeker.


The Bendy Belle