Pain Scale

“On a scale from one to ten, one being no pain at all, and ten being the worst pain you can possibly imagine, what’s your pain level?”

An innocent question asked by a doctor, pretty easy to answer, right? Wrong.

I’m at the doctor’s office for a routine check-up. I haven’t had a recent injury, I’m not currently sick, I didn’t dislocate anything today. After a seeming eternity of deep thought that really only lasted about ten seconds I respond with “I’m at about a six”. Of course the doctor asks me what happened, and all I can do is remind her about my chronic illness, and that I’m always in pain, even if all I did was sleep all day. We continue on with my appointment and she doesn’t ask any more questions about pain except if I’m still taking Tylenol for it, to which I respond that while I’m still taking it, it is no longer helping.

“On a scale from one to ten, one being no pain at all, and ten being the worst pain you can possibly imagine, what’s your pain level?”

My knee is currently dislocated. I just rode in an ambulance for an entire half hour from my high school to the hospital. I just had surgery on this knee a couple of months ago, and still have screws in the bone in order to hold my joint in place, the joint that just decided to jump out of place and leave me screaming.

After a good few seconds of thought, seconds that feel like an eternity, I finally answer, “I’m at an eight and a half, close to nine.”

The doctor looks shocked, and I know why. For anybody else this would be a ten or higher on the scale, but I’m saving my “ten” for childbirth or getting hit by a bus, whichever happens first.

Luckily this doctor can see that my kneecap is literally laying on the side of my leg, so I know he doesn’t think I’m faking it, like others have in the past. Finally they shoot me up with some painkillers, but I’m still in a lot of pain, so I ask for more. The nurse gives me another shot of whatever drug they’ve chosen for me, and tells me that she’s given me the most she’s allowed to when I ask for more. At this juncture I’ve been given the limit of painkillers and I’m still at an eight, but now I’m high as a kite, and really sleepy, so I don’t complain. The doctor and my mom start talking about popping my joint back into place, and I know how to do it, I just can’t explain it because I’m way too high to talk properly. As the doctor is explaining the procedure to my mother (of which I remember absolute nothing) I feel something move in the vicinity of my knee.

“I think my knee just went back in.” I tell them, trying at least four times to get the entire sentence out of my mouth.

I had never gone to the Emergency Room for a dislocation before, and I’ve never gone again for anything as major as that one, but I still have to answer that god-forsaken question on a regular basis. It’s always either “On a scale from one to ten, one being no pain at all, and ten being the worst pain you can possibly imagine, what’s your pain level?” or “Are you having any pain today?” Doctors don’t always seem to understand what it means to be in chronic pain. Yes I am pain today, just like I was in pain yesterday and will be in pain tomorrow, but it’s nothing I can’t handle. I don’t need any painkillers for this pain, because at this point I’m used to it. On a normal day I am around a six or seven on the pain scale, and on a bad day I get up to a nine. I even use a modified scale in my head, because I have to remind myself that normal people are at a zero on a normal day, and only use the scale when there’s an injury or illness. In my mind I’m at a three, but my scale really only goes up to a five, and I need to remind myself constantly that my zero is a normal person’s six, and my five is a normal person’s ten. I’m still saving my “ten” for childbirth or getting hit by a bus, but that doesn’t mean I’m not still in pain that seems unbearable. It’s just that I know the difference between the worst pain imaginable, and pain that is unbearable.

I now see a doctor that is extremely familiar with Ehlers Danlos Syndrome, and luckily her medical assistants seem to be too. Instead of asking if I'm having any pain, they now ask if I'm having any unusual pain. This is a nice change, because now I can say that no, I am not having any unexpected or unusual pain, rather than trying to explain that I'm always in pain, since they already know that. It's also nice because even if I say I'm at a six on the "pain scale" they know that I'm using a different one, and that they don't need to be worried about what level of pain I'm at unless I say something. It's nice to have a medical team that understands that my pain scale is different than the rest of the population that does not have a chronic illness or chronic pain. 

Ehlers Danlos Syndrome - My Invisible Illness

Ever since I can remember I've had really loose joints, to the point that they would pop out of socket at regular intervals. When I was younger I thought that this was a normal thing that happened to everybody, but I quickly learned that this was not the case, especially in middle school, when a lot of the kids in my class thought I was faking it. The dislocations started in my knees, then my ankles. I had a ton of surgeries on my knees and ankles trying to fix the problem, it wasn't until I was fourteen that we found out I had a genetic disorder, and that fixing my joints wasn't really an option.

I was in the airport with my birth mom, at a Starbucks to be exact, when a lady came up to us and asked if we'd ever heard of Ehlers Danlos Syndrome. I guess the way my thumb bent backward when I picked up my coffee cup made her think I had this odd-sounding disorder. I didn't think much of it until later, when my step-mom told me she'd done some research and we went to see a geneticist. 

Peter Byers, a geneticist at UWMC diagnosed me with Ehlers Danlos Syndrome Type III (Hypermobility Type) when I was fourteen years old. 

Ehlers Danlos Syndrome is a genetic disorder that affects the collagen, or connective tissue in the body. It is degenerative, meaning that it gets worse with age, and super rare, to the point that it often gets misdiagnosed as different, more common disorders. 

There is no cure for this disorder, and there is a 50% chance that if I have children I will pass this disorder onto them. This disorder is degenerative, meaning it will get worse over time, and my doctors say that I will probably be in a wheelchair by the time I am thirty. 

Even though this disorder is incredibly rare, I know that I'm not alone. There's even a whole foundation for it called the Ehlers Danlos National Foundation (www.ednf.org). It's just hard when people think I'm normal because this illness is often considered "invisible", but I'm getting used to it.

I have Ehlers Danlos, It is not contagious, and it is not dangerous (to you at least), and it doesn't make me any less of a great person. I am slowly learning to believe that last part, and to work through the difficulties this illness presents me with.

Nowadays the dislocations have spread to almost every major joint in my body, including my shoulders, wrists, elbows, fingers, hips, and ribs. Did you know that your ribs can actually dislocate? I didn't either until it happened to me. It turns out the stuff that holds each individual rib to your backbone and breastbone is made up of collagen, the stuff that's affected by Ehlers Danlos Syndrome. It's not fun to have a rib dislocate, but then, it's not fun to have anything dislocate. In the next few years I anticipate that every single joint in my body will dislocate and become loose, but that is just something I have to live with. No use crying over dislocated joints (unless it's a particularly painful one).