When you read through a list of typical or potential symptoms of a disorder like Ehlers-Danlos Syndrome, you frequently are scanning a series of bullet points.
- Tendinitis and bursitis may occur
- Degenerative joint disease occurs at a younger age than in the general population
- Chronic pain, distinct from that associated with acute dislocations, is a serious complication of the condition
- Fatigue and sleep disturbance are frequently associated
- Easy bruising is quite common in all types of EDS, frequently without obvious trauma or injury
- Functional bowel disorders are common and underrecognized
- Autonomic dysfunction. Many individuals with EDS, hypermobility (and classic) type report atypical chest pain, palpitations at rest or on exertion, and/or orthostatic intolerance with syncope or near syncope
- Periodontal disease (friability, gingivitis, gum recession) occurs in some individuals with EDS
- Psychological dysfunction, psychosocial impairment, and emotional problems are common. Specific manifestations may include depression, anxiety, affective disorder, low self-confidence, negative thinking, hopelessness, and desperation
This particular list was written by the geneticist who diagnosed me at Johns-Hopkins. You probably feel a little overwhelmed with just these few hand picked symptoms that jumped out at me as I reviewed them for this post. It all sort of blurs together a little bit and when you read them like this, they all seem relatively insignificant.
Ok, so autonomic dysfuntion…orthostatic intolerance…syncope…it doesn’t say much about any of that. Really, how bad can one little bullet point in a list of 25 things really be? I’m sure it is the collective experience from all of these ‘potential’ symptoms that makes it uncomfortable…right? Well, sure. Of course it all piles up to be pretty intense, but that bullet point with lots of big words you didn’t feel like thinking much about (since there were so many bullet points to read, anyway)…? As it turns out, autonomic dysfuntion is pretty life changing all by its little self. Just that one little insignificant, easily scanned over bullet point in a sea of things that can fall apart on you…apparently it can keep you from living life as you knew it forever. Yup.
Apparently, and I can attest to this, orthostatic intolerance can mean that any time you sit or stand up you might experience that ‘syncope or near syncope’ that seemed so…so bullet pointy until you woke up one day and could’t stand up for two minutes in a row without a ‘near syncope’ experience. That means passing out, by the way. It may mean ‘just’ blacking or ‘graying’ out for a few seconds, but for a lot of people, that means they just pass out every time they stand up. They can’t work. They can’t take care of their children. They can’t finish school. They can’t drive themselves anywhere. Not so insignificant after all, that little dismissive bullet point on a long list of symptoms.
My most recent Bullet Point Experience (BPE) happened today. You remember that one about periodontal disease? It was pretty far down the list. You probably stopped really reading them by that point, or at least they started seeming less significant. On the real lists it’s even worse – there are so many that you start brushing them off because it isn’t something you deal with in your EDS…until you do.
You go to the dentist and they ask if you sip on soft drinks all day or suck on lots and lots of hard candy.
Um…maybe? I mean not that much but maybe I underestimate myself?
About a third of your teeth have the enamel worn off in big spots and that’s bad. You should take better care of your teeth.
The more you think about it, the more you decide that sounds suspicious. You head back to your lists of things that can fall apart if you have a connective tissue disorder. You use Google…because you have learned that you can figure these things out better than most of the doctors you see, since they usually haven’t even heard of Ehlers-Danlos. If they have, they just think it makes you more bendy and stretchy…it certainly can’t be the reason that your enamel is wearing off of all of your teeth for no apparent reason.
Except that it is. Remember that little bullet point about tooth decay? It seemed irrelevant the first time you read over it, and it didn’t sound all that bad even if it did happen to you.
Now you do a little more investigating, and low and behold – those ‘canker sores’ you have had your whole life have been thanks to your shoddy connective tissue. Your battle with gum disease when you take obsessive care of your teeth? As it turns out, your gums may recede prematurely, and your teeth may all fall out. That sounds great.
And those spots where the enamel is wearing off on a third of your teeth? Apparently, ‘the connective tissue defect can affect the hard tissue of your teeth.’ The enamel can wear off and detach from your teeth. In fact, your teeth can just start to CRUMBLE as the enamel wears off. I found that here (again, pretty far down on the list. It was the last sentence on the third bullet point on page EIGHT)…but how can that not be on every list? Like AT THE TOP?
Your teeth may just crumble and fall out.
That’s like a bad dream. It’s actually exactly like a bad dream I had last year!
Maybe my body was trying to do a little foreshadowing so I wouldn’t be so surprised to find that out on my own one day. “Early onset of periodontal disease” sounded so vague and insignificant on the short little bullet point, half way through a paragraph, on the eighth page of a pamphlet.
As I continue on this journey of discovery and determination to be resilient, and as I participate in national and international support groups for EDS and Dysautonomia, I learn more and more what it means to experience the bullet points. My hope is to share a little bit of insight into what they mean in real life, as they are lived out by real people. Maybe you have EDS, or maybe you support someone who has it – or maybe you’re just curious – but hopefully these posts in the EDS series will help tell a little bit more of the story. Maybe it will make a difference for someone who didn’t realize just how significant a little bullet point in a sea of symptoms can really be.
If you have a story to share about how your EDS is experienced – we welcome the good and the ugly – please contact us so we can pass it on. Maybe your story can be an encouragement to another traveler on this journey.