What I Need Others to Understand About My Stickler Syndrome
I have been on this earth for a little over 18 years. In those 18 years, I’ve developed routines and habits that help me throughout the day, like most people do. I’ve grown used to the sighs and the rolling eyes, the “why can’t you just sit here with us?” and “ why do we have to sit over there?” Let me explain. I have perfectly reasonable explanations as to why I do certain things.
I have Stickler syndrome. This affects the connective tissue in the body. This also affects hearing, explaining my hearing loss, and eyes. I’ve had several surgeries in my lifetime, including my eyes and my ankles, just to name a few. For now I’m going to be focusing on my joints, bones, muscles and pain tolerance. Just so I can explain some things to those of you who are unfamiliar with the condition.
My body is always in pain. I’m used to it – the constant headaches, the sore joints. Even right now as I’m writing this, there is a ache growing in my knee. I can feel it pounding against my joints with every heartbeat, and I’m waiting for it to spread.
There it goes – now the pain has grown, making not only my knee, but the whole lower half of my leg now in pain. I’m not doing anything. I’m sitting in bed on my laptop, yet my body decides this is what I need.
When I’m with friends, even some family members, you all seem to have an annoying habit of sitting on the floor. For that I envy you. When I move to the couch, I sit on the very edge in a desperate attempt to get closer, or I search for a chair or something to pull over. I see your rolling eyes, I hear you little sighs. Please understand this: It pains me to sit on the floor. I physically am incapable of sitting the way you all do. My muscles and bones won’t allow my body to sit that way.
I have been able to sit “criss-cross-applesauce,” or however you refer to it, a total of three times in my life. I remember each of them because I’ve cried or come close to crying with joy. The last time, it took me two weeks of trying before I was able to, then it only lasted for a short time before my body sprung out, pain flaming my legs, running up my spine and making my vision cut out for a short time. You know how when you rub your eyes, or stand up too fast, you see that darkness that kind of resembles a galaxy? That accompanies my vision with the pain. Or at least the edges of my sight dim, making it harder to concentrate and see as it is.
When I try to sit on the floor, you may have noticed my legs are always extended, my arms always awkwardly behind me. I may appear fine, but let me tell you, on the inside I’m probably counting down the seconds until I can find an excuse to stand up. My hips feel like they are being twisted painfully out of their sockets, my spine feels like a hot knife is being run up and down it. My legs are trembling because the burning is getting stronger.
If I drop something, don’t rush me. I guarantee you may have seen me kick things down the halls in school until I could collapse to the ground to pick it up. This hurts, as my full body weight is being slammed down onto my knees, which are also being pushed against a hard surface. Sending all that energy onto a small bone is not healthy, and is evident to the bruises and such that litter the skin covering my knees. Or I stare at it for a few minutes as if it will magically appear back in my hands. Sometimes I’ll even ask someone else to pick it up for me. I’m not being lazy. Please understand I’m not being lazy.
When I have to pick something up, I have to work really hard and focus a lot of my attention on specific body parts. I have to relax my lower back, slowly moving down my spine till I’m hanging over my feet. Then I have to hold back my screams and such as I force my legs to bend, the muscles straining, the pain shooting through me and making me lose my balance. It may take a few tries before I can get close enough to the desired object. Then, once I get it, there’s the matter of getting back up. My legs are now shaking, trying to get out of this coiled position. The problem is, if I let them just go for it, I’ll most likely fall flat on my back. Even after I get myself to stand back up, my balance is almost always off, making me stumble a few times before I’m good to go again.
Don’t laugh at me. I’ve gotten in the habit of laughing it off, but understand, when I’m in that crouched position, it feels like a thousand tons of pressure is pushing on every side of me. Then, after standing up, my body is uneven, unsteady and also trying to regulate my pain by finding a comfortable spot.
Another common thing that seems to affect me a lot is walking. This is mostly with shopping. I’m aware I ask to sit down a lot. Something as simple as a trip to the mail knocks me out. After a few hours, my hips will burn, the pain slowly moving to my spine. My back is already messed up, so with this added pain and movement, it’s going to try and get comfortable, which always seems to just make it worse.
Now the pain is moving to my legs. My body has this habit of locking up, which usually starts with my hips. This makes me walk more painfully. I’m unable to let my hips move up and down; instead they move side to side, making me swing my legs around me. Ow.
Now my knees are going to lock up, so not only am I swinging my legs, but they are straight. Next will be my ankles, now that my whole lower half is “locked up” or “frozen.” My already bad limp is worse, and much, much more painful. The dull ache has reached a pain level that makes my eyes water. Now while all this is happening, my back is still burning, but my fingers are also getting numb, my headache has gotten to the point I can’t focus and my already bad hearing gets worse.
Now add in my asthma. My asthma is usually well under control, but when my body decides it’s going to freeze, that includes my lungs. This makes my breathing short and shallow, thus making me dizzy. My lungs are already damaged, so with this added to it, it’s not a fun time.
All I need to do is sit down.
But it seems whenever I suggest this, people get irritated. I’m sorry, but if we continue, I’ll pass out.
Along with this, people wonder why I get snappy and irritated. My body is under a lot of pain right now, to the point where the only thoughts going through my head are ways to relieve it. I don’t care about those “cute shoes that are totes adorbs.” I care about the fact that my eyesight is cutting in and out, I care about the fact that if we don’t sit down, I’m going to fall down.
Now that you’re aware of what happens to my body, let’s fast forward to when we are leaving the mall and getting into a car.
I can hear you laughing.
You are now educated on how my body locks up, freezes, whatever you want to call it. Getting into a car is not an easy task.
Let me provide an example.
Let me wrap you up in bubble wrap, but not one layer – no, enough that you can hardly bend or move. The pressure on you is painful. The heat gathering between your skin and the plastic can become unbearable. Let’s put that heat in your bones. Let’s weave it through your muscles. It hurts, it’s uncomfortable.
Now, you can hardly move your legs, your back or your shoulders, and you have pain that seems to course through your bloodstream. Now get into a car.
Or here’s another example, one that some of you might be able to relate to. I have never personally had a hangover, but from what I hear, they are not fun. Your whole body hurts, your brain is sluggish, every noise and light hurts you to your very core. You feel like you’ve been through hell and back.
Now I’m going to make you run.
When you’re done running, maybe you’ll feel similar to how I feel on a daily basis.
During the time of writing this, the pain in my one leg has spread to my back and my shoulders.
I’m used to this. I know how hard I can push myself. I know what things will help and what won’t. So please listen to me.
When I ask if we can sit on the couch instead, or when it takes me a few extra minutes to get into a car, please understand. I’m not doing this to be high maintenance, I don’t want to hurt this much doing normal tasks. But this is how I am, and I’d appreciate if you understood.
I wrote this because I realized I’ve never really explained to people why I do what I do. I just pass it as a joke to cover it up.
I do have good days sometimes where I’m able to move smoothly, quickly, etc. My pain is low, making it more like an annoying dull ache. Other days I can hardly get out of bed, being plagued with pain that fills every inch of my body. Every time I’m able to sit on the floor, pick something off the floor, have a good day at the mall or quickly get into a car, I’m cheering on the inside. It’s something so common or second nature for you guys that you might not understand how someone else could struggle with it.
My Stickler syndrome isn’t noticeable at first glance. You may notice I have a limp, but that’s it. I don’t have a handicap sticker for my car, I don’t have a cane or another mobility assistive device. I have hearing aids and bad eyes, among other things, but I’ve had wonderful doctors and family and friends to help me along the way. So people forget.
So please be patient with me. I’ve now taken time to try and educate you to help not only myself, but anyone else like me. I know it’s frustrating. I try my hardest and I work through the pain – the least you can do is show me some respect. To restrain from the eye rolls, the sighs and the comments. All they do is make me angry and embarrassed. It’s not going to make me move faster or easier, it’s just going to make me get upset with you.
Thank you for reading this. I think it’s something that needed to be addressed. If you have any questions I will gladly answer them. Have a lovely day.
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Thinkstock photo via Tishchenko.