May is Ehlers-Danlos Syndrome Awareness Month, so I’m going to talk about my lovely illness a little more than average. Why? Well, first, because it’s taught me a lot. Second, because people don’t talk about random, rare genetic disorders that much, but people still live with them. I don’t think anyone should have to endure them alone.
So, something that’s been on my mind a lot lately is how when I was diagnosed, I had no idea that my life would be impacted in any real way. I knew that I would have to do some genetic testing when I wanted to have kids and that I’d have check-ups here and there to make sure the cardiac part of my condition wasn’t changing. But at the time, there was nothing to say that my life wouldn’t be otherwise normal.
Ehlers-Danlos: A Refresher
{Source}
From The Ehlers-Danlos Society:
Ehlers-Danlos syndromes (EDS) are a collection of heritable connective tissue disorders. Either directly or indirectly, EDS are known or thought to alter the biology of collagen in the body (the most abundant protein), which can lead to multi-systemic symptoms. Each type has certain physical traits and with notable exception to the most common form, the hypermobile type of EDS, most types have a known disease-causing gene.
There are physical characteristics that are common to all types of EDS, including hypermobile joints (joints that move in greater amounts than expected) and skin involvement, such as any of the following: soft, stretchy, saggy, too thin, easy bruising, easy wounding, poor wound healing and/or atrophic scaring.
Each type is a distinct entity and may have very specific and unique features. It is highly improbable to have more than one type of Ehlers-Danlos syndrome, but as they have features and ‘biology’ in common, each type may appear to have variable features of other types.
I have the Hypermobility type. No one else in my family has EDS. You know, all genetic disorders have to start somewhere. I’m the “somewhere”. Sorry, descendants.
Ehlers-Danlos: What I Knew
This part is easy. When I was diagnosed, I knew…
… I am super-flexible. My joints do all sorts of bendy stuff. I’m pretty great for party tricks.
… My type of the disorder isn’t dangerous. My heart’s okay.
… That this illness presents in all sorts of weird ways. It could explain the “growing pains” I had as a kid and migraines and digestive issues. Yay for explanations, right?
Ehlers-Danlos: What I Didn’t Know
I didn’t know anything. I didn’t know…
What @EllenSlater learned about #EhlersDanlosSyndrome by living with it Share on X… What the pain would be like. I had migraines for a few years before my diagnosis, so I knew what dealing with pain was like. But… I had gotten used to head pain. When suddenly my neck and shoulders started hurting, I was thrown for a loop. When that pain started to migrate throughout all the muscles of my body, I was baffled. And then my joints started hurting, too. I didn’t know I’d start to feel like an 80-year old in a 20-year old’s body.
… That I would have to move so much. I get stiff really fast if I’m stationary. Enter: lots of walks and stretching and fidgeting.
… How exhausting it could feel. I really believed I wouldn’t have to feel any effects of this. I thought it would be like my super-mild scoliosis: something I noted when I ran through my medical history, but nothing that actually had any bearing on my life. It became something that I realized I would have to deal with every day.
… That I’ll try anything that might help me feel good. I’m a skeptic, but hey, I’ll try acupuncture if you think it’ll make me feel better. Or essential oils, or some supplements, or whatever you have. Bring it on.
… The importance of being your own advocate. Doctors who don’t specialize in EDS don’t know about EDS, generally speaking. It’s weird, and it presents in a million and three weird ways, many of which can easily sound fake. I learned really quickly that I needed to know as much as I could about my own health so I could help medical professionals help me.
… That sometimes I can’t trust my own joints. Uh, I fell into an Uber car the other day because my ankle just stopped working. Sometimes I “trip” on flat ground, but that’s really just my ankle being unreliable. My hip issues before spring break were the result of a little extra mobility in my hip joints. I was typing to a friend the other day and my hand froze in a strange position and hit a bunch of random keys. I try to be extra-careful when I’m walking… or doing anything.
… How much I like helping people. During times when I’m not feeling so hot, I realize that I want to help everyone else feels as good as they can. I realize just how much it sucks to feel bad, so I want to help.
… How important it is to be honest. I am really good at not complaining most of the time. Life is good, after all. However, it does nobody any good for me to try to pretend I’m feeling awesome when I’m not. It exhausts me, makes me feel worse, eventually makes me a little short of temper, and then it makes the people around me feel bad to know I was pretending. People who love you want you to feel good. You just have to let them help.
It's Ehlers-Danlos Awareness Month. What's #EhlersDanlos? I'm glad you asked. Share on XHow was your weekend?
What has your own experience taught you about your health?
Linking up to Thinking Out Loud with Amanda
A fellow spoonie <3 May is also Celiac Awareness Month…it should jut be autoimmune awareness month! And I just learned more about EDS so thank you for that, my friend!
Spoonies gotta stick together! And I honestly learn more and more about Celiac and food allergies and all sorts of autoimmune disorders by reading your blog (and your Freedom Features!), so thank YOU for all your efforts!
You are quite remarkable, sweet girl! you yet again amaze me – love your blog. never heard of this condition – thanks for bringing it to my attention. Make the end of your school year fabulous!!!!!
Thanks so much, Mrs. Davis! Have a great weekend 🙂
This is fascinating. i didn’t know much about it! Thank you so much for the info. I think it explains a lot about that hip issue that you had/have. Silly bodies. CUT US SOME SLACK
Seriously, all I wanted to do was walk! Is that too much to ask?! (Apparently ? )
Wow, this is really transparent of you Ellen, and I am so blessed by you sharing that you even want to help others. Thank you for sharing this. You seem to have a really good attitude about it, and I will be praying for grace for you. <3
Thanks so much for your kind words and support, Emily ❤️
Yes, Ellen- this is NOT something you should have to endure alone. I’m so glad you’re speaking out about the things in your life that affect you daily. Thank you for sharing your heart.
I so appreciate your support, Julia. You’re lovely ?
Thanks so much for sharing about EDS! I’d honestly never heard about it before so I’m so glad you did. It definitely isn’t something you should have to go through alone and in total seriousness, I’m here if you ever want/need to complain! I totally get the necessity of blowing off a little steam sometime, but also really respect and appreciate your positive perspective!
Aww thanks, Liv! You’re too sweet and we should definitely chat more 🙂 Have a lovely weekend!
I’ve never heard of EDS, so thank you so much for opening up and sharing this! As someone with Celiac disease I can relate to this. I agree with needing to be honest; this is something I struggled with at first too!
xo, Kristina
Thanks for sharing your experience, too, Kristina!
Thanks Ellen. I learned a lot more today about your condition. You are a number one trooper. You can be such an advocate for fellow EDS sufferers. Love you!
Thanks, Grandma. Love you, too!
I LOVE YOUR POSITIVE MINDSET!!! That’s the only way to live, ESPECIALLY if you have complications such as these! I have a whole HOST of health issues myself but every day I wake up with a smile because there is no point in dwelling!
OMG GiGi, you’re so kind! I adore your positivity, too! Gotta show our crazy bodies who’s boss 🙂
This is such a great post! I’ve heard of Ehlers Danlos (especially as it’s apparently common in people with coeliac disease!) but I don’t know all that much about it.
I totally feel you on trying anything if it could possibly make you feel better. I’ve pretty much tried every treatment imaginable in the last 10 years!
Thanks, Kristy! I hope you find/have found some relief in something. But you seem to eat pretty well with all those allergies 😉
This was so interesting to read, Ellen! Well written, too. I think being your own advocate (for any type of health issues) is SO important. I’ve learned that more than ever over the last few months.
Thanks, Emily! Yep, an injury can definitely show you that your and your body know best.
Being your own advocate is so so important in health care. No one knows your body better than you. This is awesome that you are learning about Ehlers Danlos and teaching others out it too. I had no idea what it was before your blog.
I’m glad you learned something, then 🙂 Thanks for reading and reaching out!
I think you’re absolutely beautiful for spreading awareness for EDS
I LOVE your body positivity message ?
Thanks for sharing, E. I can only imagine what you would have gone through but you’ve embraced it with grace and maturity. I’ve never heard of Ehlers Danlos before, but thanks to champions like you, awareness is raised. 🙂
Aw, thanks for the kind words, Arman! The internet is a pretty cool place for all the sharing of stories and snacks, and I’m grateful to be able to tell all about mine 🙂
Thank you for sharing! It’s not anything I’ve heard of before. I think it’s great you’re raising awareness. You’re so mature about it and I appreciate your positive perspective.
Thanks, Kate! Congratulations on graduating! 😀
“During times when I’m not feeling so hot, I realize that I want to help everyone else feels as good as they can. I realize just how much it sucks to feel bad, so I want to help. ” <– that's seriously the sweetest thing ever. I've never heard of EDS, so I think it's super awesome that you're talking about it and getting awareness out there!
Thank you, Amanda! You’re the best 🙂
I did not know anything about EDS before this post. Thank you for informing us and sharing your story. You’re a strong person to want to educate others on this disorder that you’ve been dealing with for so long. 🙂
Thanks, Kaylin! I’m glad to be able to share my experience – and even more grateful that people like you want to listen and learn ❤️
Fellow zebra here! I only recently got my diagnosis in March (http://www.sunshineandspoons.com/2016/04/the-best-and-worst-news-of-my-life.html). At least 2 of my children have EDS as well. Thank you for helping to raise awareness!
Ahh I’m so glad you got an explanation for all your struggles. Of course, it’s not a fun explanation, but let me know if you ever want to vent! Thanks for sharing your story, Hannah ❤️
I had not heard of EDS before. Thank you for sharing your experience with it and spreading awareness. You’re so resilient, Ellen! ♥︎
Thanks for reading, Alison! And thank you for sharing all your beautiful, inspiring story, friend. Your blog always brings a smile to my face ❤️
I have enjoyed reading your blog, I have RA, osteoarthritis, Fibromyalgia, and Lupus, gastroparesis, and happen to see 3 letters in my chart one day EDS. I wasn’t familiar with this so I ask my Rheumatologist what it was, he says “it’s just a connective tissue problem”. That’s it that’s all I got so I am in search of someone in my area to see as this could have been passed to my daughter. I have learned so much from you, and it has filled in a lot of puzzle pieces.thanks so much!
Oh my goodness, Melanie, my heart goes out to you. When I was diagnosed, I thought (and so did my doctors, it seemed) that it’s “just a connective tissue disorder”. Since then, I’ve realized just how many symptoms/quirks I have that EDS explains. Most EDS docs take a while to get into, but there’s a ton of support on the Ehlers Danlos National Foundation forums, on Inspire.com, and also I’m just an email away if you ever want to chat. I’m not a certified expert, of course, but I have a little experience in talking to medical professionals and researching my own issues. I’m glad I could help you out some!