May is Ehlers Danlos Awareness Month, so I’m … um… spreading awareness. I saw a meme the other day that referred to it as “Bendy B*tch Disease” and I laughed so hard. BBD! But there is a whole lot about living with this condition that isn’t funny in the least.
A few of my friends have had questions recently, and I thought I’d use this platform to educate about Ehlers Danlos Syndrome and its related comorbidities. And y’all can ask me anything, I don’t mind answering questions! (Please keep in mind, this article addresses my own experience with EDS, and it can manifest differently among patients. Please consult your doctor for correct diagnosis and treatment option pertaining to you as an individual.)
Can you develop the syndrome over time?
No. Most of us suffered for years – sometimes decades – without a correct diagnosis because symptoms can seem obscure. And the medical community tends to think of horses when they hear “hoofbeats” (i.e. causes of injuries and illness,) and not zebras. Which is why the “mascot” for this condition is the zebra. It is 100% genetic. You cannot ‘catch’ it, develop it (although you can develop more obvious symptoms,) or “cause” it in any way, shape, or form. We are born with it. Genetic and clinical testing is often required for accurate diagnosis (do a search for the “Beighton Score” for further explanation.)
Can holistic approaches cure Ehlers Danlos Syndrome?
No. Although I do love holistic remedies and believe in their helpfulness in many ways (and I try to treat my overall health with eating clean when I can,) the truth is that I require many Rx medications every day. Each one has proven itself necessary, as I have tried at different times to stop most of them at one time or another, with disastrous, sometimes life-threatening consequences. So, I’m a big fan of natural medicine, but a bigger fan of survival. I hate that Big Pharma is a big part of that survival, but it is what it is. Part of my constatation of illnesses show up in that my body cannot do the things your body does automatically. My unmedicated body cannot control my blood pressure, temperature regulation, heart rate, or digestion – as I have gastroparesis, which is paralysis of the entire digestive tract, which is why I’ve lost 50 pounds in a short span of time, and why I’m malnourished (which causes even more symptoms and pain. it’s an awful cycle.)
What do you use for pain management?
Ice packs. Voltron. Tiger Balm. And tears. Oftentimes, the course of pain management for my condition and the severity of it, can be opioids. That’s how brutal the pain can be. I have seen pain management doctors, who put me on CBD oil because other than opiods, there are not too many meds I can add to my already-vast Rx repitoire without complicated side effects. I’m glad CBD works so well for some folks, but it may have well been snake oil for me. I cannot (rather, will not) take opioids, as I am a recovering alcoholic with 22 years sobriety and taking opioids would be extremely risky for me, addiction-wise. I do take cannabis gummies – and honestly, because I take the totally legal kind, they help but only so much. I long for the day cannabis is legalized so I can achieve better pain relief. Truly, people, it’s medicine God himself planted in the dern ground. Its medicinal properties are scientifically proven. So, legalize in it my state already. Okay, off my soapbox.
How come you dislocate and subluxate your joints all the time? Because I’m a super-athlete. JUST KIDDING! Because completing everyday tasks can be like running a triathlon for a healthy person. We tire easily. Subluxations are just partial dislocations of joints – mild or incomplete dislocations. And they happen all the time. Every day, something on my body subluxes; it’s just part of my reality. Our ribs can sublux due to coughing or sneezing. Barfing is the worst for subluxing ribs. My left thumb shifts out of joint at least twice a day. Braces – elbow, wrist, knee, ankle – you name it – are a part of our everyday existence. Every morning I take a “pain inventory” to help me know what needs to be braced for the day. I have a vast collection of braces for my joints and it’s a rare day I don’t need any at all. Speaking of EDS stability paraphernalia….
Why do you use a cane sometimes and other times, you do not? Because some days we “flare” worse than others, and also because many of us also have Postural orthostatic tachycardia syndrome (POTS), which causes dizziness, and a cane is a good stability aide on unstable days. There are days I don’t use my cane at all, and there are days I can’t walk to the kitchen without it. This will, unfortunately, worsen as I get older, and as my joints become less stable as well. That’s the bugger about this condition – we will not improve as our bodies age. Wear and tear on the joints from everyday life will become more prominent. (PS: It’s an unfair assessment to pass judgement on someone who uses a mobility aide only on “bad” days. One day, we need help getting around, and another, we can walk upright unaided.)
Have you tried yoga?
*Rubs temples*. Yes, I have. Ended up subluxing my hip. Different patients have different opinions on yoga- from what I’ve experienced and been told, is terrible for people with my type of EDS (Hypermobility Type III) because our joints are already ridiculously loose and stretchy. Bending them more in those positions only increased my pain and caused damage. Our joints are too lax already.
What is a “flare” and why are some days worse than others?
According to that Big ‘Ol Brain in the Sky – Google – it is explained thus: “The term “flare” can mean several things, but could be increased pain, GI distress, MCAS reactions, dislocations, subluxations, cardiovascular challenges, dysautonomia symptoms, insomnia, fatigue, brain fog, a sense of being “wiggly” or dangerously clumsy and more.” And easier way to think of it that my dashboard lights go off at once. ALL SYSTEMS are “off.” Flares can result from being sick (with a virus or other, and that’s constant, as I also have a degree of immune dysfunction,) being over-tired, pushing past my limits, or not sleeping, eating gluten, and about 50 other possibilities.. Flares are miserable beyond words, and you feel like you will never feel decent again. EVERY time, so severe flares are also pretty good at triggering depression. On our “good” days, it is natural to want to do ALLTHETHINGS, because we never know when our pain will be manageable again. So, we push past what we should, often resulting in – you guessed it – another flare. Supremely frustrating.
Have you consider EDS may be caused by childhood trauma?
I believe the mind, body, soul connection is imperative to consider. But to me, this, to me, is an old spinoff on the question: “Is it all in your head?” Although I do have significant childhood trauma, Ehlers Danlos has zero to do with it – other than the fact that I was constantly injuring myself doing the simplest things as a child and was considered “clumsy,” not having had any idea what was wrong with me. Also, the emotional days can contribute to overall flares, just like any other trigger. I have – thank God – worked on my trauma through several years of therapy, and I will probably go to therapy for the rest of my life. I will goto therapy forever -not because of the trauma – but because my therapist gives me tools to deal with the fact that I am losing mobility slowly, must deal with awful pain on the regular, and not being able to do the things you want/need is depressing, frankly. My therapist imbues me with hope, coping skills, and encouragement. I am not going to get “better,” (barring any unforeseen miraculous new treatments which may come along due to increased research, which is why I am spreading awareness. Here’s hoping!)
In conclusion, thank you for asking questions, my friends. I will answer them as best I can! Ehlers Danlos Syndrome is a spectrum just as many conditions present. Some people with it lead normal lives and just experience a little pain here and there. But for some of us, it’s debilitating and progressive. And we need the compassion and understanding to thrive through chronic illness and pain.
“If you are spiritually deconstructing, you never knew Jesus in the first place.”
I hear this refrain over and over again. It’s the most invalidating thing you can say to someone who is rebuilding a faith life, because it requires no questions asked. A quick, pat explanation to justify one’s traditional beliefs that people who deconstruct are fallen. Deceived.
No fuss, no muss. Easy-peasy. If you are questioning the inerrancy of the Bible, you were never a “believer” in the first place. Which is both harshly judgmental – and frankly – nobody’s call to make about someone else’s person’s personal faith.
But that would be a wildly assumptive dismissal, because it’s for my love of Jesus I began questioning.
It’s because Jesus is SO real to me that I started this journey.
Either Jesus was who he said he was, or he wasn’t.
Either God is a god of warring, or of peace.
Either God is a god of unconditional love, or none at all.
Either God is a just god, or a corrupt one.
Either “it is finished,” or it is not.
And that’s far more important to me than believing a grown-ass man was swallowed by a whale and lived three days in its body “vomited out Jonah upon the dry land.”
We learn the Old Testament stories in Vacation Bible School, right out of the gate. Horror stories.
Abraham being willing to sacrifice his son, only to have God say just kidding! Just had to make sure you would snuff out the life of the child you prayed so long for, and I rewarded you with. Is God manipulative, or loving?
The nature of God is not – in my travails – sending a catastrophic flood to drown all of his creation – excepting one family he deemed righteous. For that righteous man who would later get drunk and have sex with his daughters to propagate the species (with even more beings that God knew good and damn well would also become corrupt in their humanity.)
I no longer believe it, because of the teachings of Jesus himself. The Bible contradicts itself in the most dangerous way, because it teaches that you’d better get your belief system right OR. ELSE. It’s the ultimate test of “getting it right.” And we humans are not so good at getting things right, as a general rule.
Does that sound like Jesus to you? Examine the humanity of Jesus; not just the divinity.
I am not at all anti-Bible. I am Bible-in-context of history and allegory. And the grace and justice and righteous table-turning of Jesus? I am definitely “pro” that.
“I guess you’ll find out when you die and spend eternity broiling in Hell,” they say, when you deconstruct.
To which I say, the Jesus I study and know is not about eternal conscious torment. “Turn or Burn” is loaded with law, as opposed to grace.
“You can question God about “x” but never “y.” and CERTAINLY not “z.” they tout.
Except that you can, because it’s the nature of humanity. And every good relationship requires excellent communication, why would this be any different?
I have no desire to throw “the baby out with the bathwater” – Jesus out with the organized religion. Lo, I say unto thee, in my quest of soul-searching, he came out on top.
“Love one another,” says he. And everything else he ever says orbits around that one concept.
So question, child of God. Let the Holy Spirit roam around free-range in your soul, unconstrained by thousands of years of human dogma, politics, and legalism. Ask the Spirit to show you what is true and what matters most in the ancient book. Sit with the Spirit as Jesus sat with his disciples, just chillin’ with the homies. Just BEING; not striving.
Oh, I did know Jesus “in the first place,” but not as I know him now.
Not as part of a Jekyll and Hyde spiritual pairing. Not as one whom I will have to hide behind when I get to Heaven, so as not to upset the father with my humanity. Not as one whose grace hinges on us “getting it right.”
But as One with us, whole in love; full of grace. One who sits with me in my darkest hour. One who set the example of turning the other cheek and made repeated declarations that “the greatest of these is LOVE.”
Musings of a Gypsy Soul 