I am VERY excited to share this guest post with y’all today because it is written by one of my very favorite online friends. Jillian and I have not been friends that long but she has become one of my closest confidantes and someone I talk to pretty much daily. She has a HUGE heart, a superb sense of humor, and is beautiful inside and out. Ehlers Danlos Syndrome affects so many people and I am hoping that by sharing Jillian’s words someone else can be educated or perhaps diagnosed.
Hi! My name is Jillian and I was born with a hereditary connective tissue disorder called Ehlers-Danlos Syndrome.
EDS affects collagen, which is a substance found in almost every part of the body. The easiest way to explain it is—if a person without EDS has Super Glue holding their body together, mine is more like glue from the dollar store. There are multiple types of EDS, and symptoms can vary wildly even between people with the same type. Some people are completely bed-bound and some live with it their whole life without ever knowing.
My type of EDS is called “hypermobility type”, or hEDS.
As you may have guessed…the main symptom is…wait for it…hypermobility!
If someone has ever told you that you’re “double-jointed”—that is hypermobility.
My range of motion is much greater than that of a non-hypermobile person. For instance, I can touch my thumb to my wrist, bend my pinky so it makes a right angle with my hand, and lock my knees so they bend backwards. However, it is important to point out that you can be hypermobile without having EDS, so don’t be alarmed if you can also do those things. EDS generally has systemic complications as well, due to the presence of collagen throughout the body.
Because my weak collagen can’t hold my joints in the right place, I have random subluxations, dislocations, and wide-spread pain.
I have daily head pain that alternates between uncomfortable and full blown migraine.
I’ve already started developing osteoarthritis in some of my most unstable joints.
I sometimes faint when I stand up/stand too long because my noodle-y veins don’t work well and my blood pressure drops.
I am prone to muscle, cartilage, and tendon tears, often without actually doing something that should have caused the injury.
I have to wear knee braces to prevent hyper-extension and subluxation, and most days I need to use a mobility aid to ensure that I don’t hurt myself.
Up until about 2 years ago, I didn’t “look” sick.
I hadn’t been diagnosed with Ehlers-Danlos Syndrome yet, but I knew something was wrong.
I had already had migraines and a large number of injuries that were always blown off as me being “clumsy”/growing pains etc. As of Summer 2015, I was actively pursuing an explanation for a multitude of seemingly unrelated symptoms. I was miserable, but living a fairly normal life. Then I “tumbled over the cliff”, so to speak, and my EDS has been progressing fairly rapidly for the past 2 years.
There is no cure for EDS, and not much in the way of standardized treatment.
Generally, they tell you to try and protect your joints and to do physical therapy. Everything else revolves around trying to make yourself comfortable. Because EDS can affect your entire body, it’s important to have a multi-pronged approach.
Below are some examples of what I do to manage my conditions.
- Medicine. This is controversial—I know many people have strong feelings about this, but it’s a very personal choice. Personally, taking pharmaceuticals has allowed me to continue working and allowed me to live a fuller life.
- Supplements. EDSers tend to fail at absorbing vitamins and often have deficiencies. Most important for me are calcium/magnesium and l-methylfolate.
- Heating pad. Ice packs. Pretty self explanatory. ☺
- Nerve blocks/Radiofrequency ablations to reduce/control pain.
- Massage every 2 weeks.
- Chiro at least once every 4-6 weeks. Technically chiro is contraindicated for EDS, but honestly my chiro is the only reason I’m still walking at this point. I trust her, and she only does gentle movements on me, mostly using the activator tool.
- Physical therapy.
- Occupational therapy.
- Epsom salt baths. I like to also use Lush products to double up on self-care and actual symptom management.
- Doctors, doctors, doctors. I have a lot. They all help with one little piece of the puzzle.
- Veganism. Again, controversial. I am vegan for ethical reasons but it does seem to be helping me with my health as well by reducing inflammation and reducing my stomach issues.
- Drinking an absurd amount of water and/or electrolyte supplements.
- Bracing. My knee braces are custom fit Donjoy Defiance braces. They have helped immensely. I also have a number of other braces depending on what is bothering me on a particular day.
- Handicap parking placard. It took me a long time to get this because I was embarrassed, but you gotta do what you gotta do. Sometimes walking across the parking lot is the difference in me being able to complete an errand or not.
It’s hard for me to even articulate the mind-f**k of going from more or less able-bodied to needing mobility aids at age 28.
One of the hardest parts for me has actually been dealing with people who feel entitled to know all about my health history just because I am now “visibly disabled”.
I get watched as I exit my car in an accessible parking spot.
I get watched at the store as people try to figure out why I’m limping or wearing giant metal knee braces.
I sometimes get dirty looks, like my presence is offensive (or maybe they think I’m faking?).
And a few times a week I get asked, “what’s wrong with your legs?”, or something similar.
As an introvert who gets sensory overloaded and is often in a lot of pain when I’m out, this type of interaction can be very difficult for me. I just want to get my groceries with minimal interaction with strangers, like everybody else.
If the person seems sincere, I try to be patient and polite–but it’s also not my job to educate the public on how to react to a person with disabilities. And honestly, most people are just really nosy.
If I’m low on spoons, rude questions will generally get rude answers.
When you answer sarcastically, the majority of people understand that they’ve violated a social boundary and will apologize, so it’s actually an effective strategy.
Most don’t press further, and the conversation ends without you having to recite your medical history to a complete stranger.
I’ve been compiling a list of ways to respond to these questions, as sometimes I struggle in the moment to respond the way I’d like. Some are from me and some are from members of my EDS support group, reposted with their permission.
For all my spoonies rocking the mobility aids, braces, NG tubes, oxygen masks, holter monitors: here are are some of my favorite responses for the next time someone asks “what’s wrong with you?”, “what did you do to yourself?”, or “why are you walking like that?”.
“I was attacked by Bigfoot!”
“You should see the other guy!”
“I had a fight with gravity…gravity won.”
“The bungee cord was too long.”
“Fought a bear/lion/shark/all three at once.”
“A game of Twister got really out of hand.”
“Nude skydiving accident! Want to see pictures?”
“Oh, on the weekends I get shot out of a cannon at the circus.”
“SHHHHH. I’m undercover!”
If you’re disabled, how do you handle this stuff? I’d love to hear from y’all!
About the author: Jillian Kerr lives in arizona with her husband, two dogs, and two tortoises. she loves sci fi, vegan food, reading, and has a borderline hoarder-y legging collection. you can find her on instagram at @kerrlyfries.