What Few Ever Know

 

Just so you know, I don’t want to write this post. And I REALLY don’t want to post it for the entire interweb to see. I don’t like being vulnerable with everybody. And with this post, I’m really putting myself out there. But. I also want to tell you because you’re mah frens. <3 So, here we go.

Let me begin with this relatable infographic from Pinterest.

 

 

I have a chronic illness.

It’s taken me a long time to be able to say those words. I still hate them, but after all this time, I’ve reached a level of acceptance.

What is my chronic illness? (actually I have a few including asthma and hemophilia but today I’m talking about one in particular)

Ehlers-Danlos Syndrome

(If you’ve ever heard of this, PLEASE tell me. I’ve met one person who actually knew what it was without me explaining.)

 

What is EDS?

I have EDS type III, also known as hypermobility type (there are 13 different “types”). Feel free to google it for a more in-depth explanation, but here’s a brief run-down.

Ehlers-Danlos Syndrome type III is a genetic, degenerative, collagen defect that causes every part of my body to be extra stretchy. My tendons and ligaments aren’t tight enough to hold joints together–causing daily dislocations or subluxations (partial dislocations). My intestines aren’t firm enough to properly digest/move food through. My skin is soft and tears easily–I have a lot of scars. My blood vessel walls aren’t firm enough to keep blood circulating–hence my feet/hands are perpetually cold–and I tend to pass out if I stand up too fast.

 

 

The thing with EDS is that even though parts of my body literally become disconnected at times, EDS is an “invisible illness.” People with EDS look perfectly normal.

And that, sadly, causes a lot of people to think folks with EDS are making everything up.

 

What’s is it like to have EDS?

Here’s how one mom describes her daughter’s pain:

“Chronic, severe pain is common in EDS. My daughter describes it as layers of pain: there is the pain of bendy joints, slipping in and out. There is muscle pain, from overworked muscles spasming as they try to compensate for the laxity in the joint. There is nerve pain, thought to be from nerves being stretched when joints dislocate repeatedly. Vitamin D deficiency is common in people with EDS and can lead to bone pain.” -Unknown

The common theme here? Pain. EDS is an incredibly painful condition. Not only are people with EDS more prone to injuries…

… but there’s little that can be done to prevent symptoms/chronic pain.

EDS affects every person differently. Some are affected to the point where walking becomes so painful they use a wheelchair as their primary mobility. For others, they have few noticeable symptoms, except maybe an ankle that sprains frequently.

Individuals with EDS are often clumsy.

(I wish my falls were as magnificent as Mr. Caution. ;) )

 

They are also active, fidigity people:

 

What can be done?

Braces, shoe inserts, and compression wraps are all treatments for the notoriously dislocating joints. Some people use crutches to preserve the life of their hips (but crutches cause their own set of problems and often cause shoulders to dislocate). Others use wheelchairs. It varies with each person.

Personally, I have a massively large box of assorted braces. Ankles, knees, back, shoulders, elbows, wrists, fingers… you name it I have it. I have special crutches that are easier on my shoulders. And I also have a wheelchair (it’s purple. Purple is very important. ;) ). Do I wear all of the braces every day? No. Do I use the crutches or wheelchair all the time? Nope. I only use what devices I need when I need them. Believe me—I don’t want to use any of the devices, so I only use what I absolutely must!!!

 

Each day is different. Each new day brings new challenges and victories. Some days, I do need my wheelchair for long shopping trips. Some days, I don’t even need to wear my knee brace. No two days are ever the same.

 

Why am I just telling you now?

To be honest, I’m scared. Having an invisible disease is tough. People judge. Think I’m making it up. Think I want sympathy.

I DON’T. That’s the very last thing I want.

This infographic is shockingly accurate:

So yeah. Pretty much all of those describe me.

But God is helping me to see that it doesn’t matter in the least what other people think of me. He made me this way to accomplish His perfect plan. And His amazing plan isn’t changed by others’ opinions of me. He’s showing me how being vulnerable can help me help other people through their own struggles. And I love helping others.

But really, I do have a very specific reason for telling you now. However, that will come in a different post in a few days. :)

 

Let me again state that I’m not asking for sympathy, pity, or attention. I’m not saying all of this to have a little “poor me” session. Not in the least! In fact, it frustrates me when people say “I’m so sorry for you.”

This is who I am. God made me this way for a very specific reason. And because He made me, no one, including myself, should be sorry!

Yes, this is a blog about writing. But it’s also a blog about me. And EDS is a part of me just the same as writing is.

But I don’t want to focus on the negatives. I want to focus on the beauty and blessings Christ has given me, and fortunately, I have a bit of a “Polyanna Complex” / “Glad Girl” disposition. ;)  So every now and again, I’ll do a lifestyle/EDS post. Because I want to show everyone how amazingly blessed I am, even living with a chronic illness.

 

~~~~

*exhale*

Okay. Well. Kudos if you’ve made it this far.

Now. Your turn:

Do you have any questions about EDS?

26 comments

  1. Kellyn Roth says:

    I’ve never heard of EDS before. It sounds pretty bad.

    I feel like I should say “I’m sorry,” but I don’t want to be like that. I know I wouldn’t want people to be like that if I had an illness like EDS. I do know you’re an amazing person, though. :)

    • Ivy says:

      Most people haven’t heard of it. That’s one reason I wanted to share this–to raise awareness.

      Thank you for the encouragement. :) YOU are an amazing person.

  2. Pam McDonald says:

    Rosebud, You are an amazing young woman who is first and foremost a child of the Living God. You are a princess of the King of all kings. He has given you this platform for you to accomplish His perfect will for your life. You were much prayed for before He planted you in your mothers womb and you continue to be prayed for as He takes you thru this journey. Your light is like the brightest shining star in the heavens. Only when you are on your face before your Savior will you have any idea of how much your God has used you to touch the lives of the multitudes of others who will also be on their faces before their Savior. I love you to Jesus and back.

  3. Jesseca Dawn says:

    *hugs* You are amazing, Ivy. I don’t have any experience with EDS, but my mom has MS, which is another “invisible” chronic illness. Because of living with her, I know a bit about how hard it can be when people say “but she looks normal!” or “why are you telling us this? Do you want us to feel sorry for you?”
    And I’m just like . . . “seriously, guys?!”
    You both are some of the most amazing people I know. <3
    I'm looking forward to the post with that 'very specific reason' sometime soon! :)

    • Ivy says:

      *hugs back*
      MS is so hard. I know several people with MS, and wow–they’re incredible. You definitely have a unique perspective of what living with a chronic illness is like. (Can I just say you’re going to be a fantastic nurse?? :D )
      You’re so sweet and encouraging. I’m so grateful to have you as a friend!

  4. Julie says:

    My daughter forwarded me your post. I was just diagnosed with EDS. Thankfully, I had some understanding of it because I have a friend who’s daughter has it bad.
    My used to be called JHMS but they have changed the name to HEDS. It remains the same. I am blessed to be able to still walk and not dislocate things often but I have fibromyalgia with it and so I live day by day accomplishing what I can.
    My heart goes out to you and I will be praying for you.

    • Ivy says:

      Thank you for reading and commenting! It’s always encouraging to meet another EDSer. I’m glad to hear you don’t have frequent dislocations, but goodness, fibromyalgia is a beast! I’ll be praying for you, as well. One day at a time has become my motto. :)

  5. Bethany says:

    You are such an inspiration, Ivy Rose! Thank you for writing this post, I was encouraged and also admonished by your amazing courage. I’ll be praying for you :)

  6. Kelsey Bryant says:

    Wow, Ivy Rose. You are so inspiring and such an encouragement to me! Thank you for sharing about this.
    (Oh, and I, too, am looking forward to learning about the “specific reason.” :) )

  7. Karyssa Norton says:

    Even though people say that they don’t want pity, my first instinct is to say “I’m sorry”. But I won’t say that. I do want to give you a virtual hug though, because I can tell you’re a strong girl (even though I’ve never met you in person ;) ).

    I’ve actually never heard of EDS before. I do have a few questions. Are you in pain all the time, or just some of the time? And, you said that your intestines aren’t firm enough to digest food properly, so are there certain foods that you can’t eat?

    I’m so glad that you’re accepting that this is the way God created you! :D Stay strong, Ivy! Because I think God is going to use you in some pretty amazing ways! :)

    • Ivy says:

      Thank you for not saying that. I do accept hugs, though. :)

      Most people haven’t heard of it, so I hope this post was informative! To answer your questions:

      1) I’m in pain all the time. However, I’ve gotten used to the everyday pain and it has become my normal–I barely notice it anymore. But if I do any activities (running, jumping, walking) that’s when the pain ramps up and becomes a lot more noticible.

      2) My doctors have tried so many different things to get my gut to work properly, including medications and diets. Right now, my stomach is doing very well with a gluten-free diet, limited intake of dairy products (I can have them, just not all day every day), and a few different medications. So yes–gluten and dairy make my stomach go into shut-down mode (more than it normally is), so I try to stay away from those. :)

      Thank you for the encouragement! I can’t wait to see what God has in store for me. :)

  8. Emily McConnell says:

    I’m so proud of you, girl, for making yourself vulnerable and putting yourself out there. <3 You are a blessing, you are an amazing young woman, and I know God's got great plans for you. :) Blessings on you, Ivy, for putting this up!

  9. Rebekah Eddy says:

    I pray that God will grant you the perfect amount of grace and strength for each new day, in facing every new (or old) trial. This post was very inspiring and eye opening. I know everyone who reads it will come away blessed and with a new outlook on their own lives. Praise God you are strong enough to use even this to bring glory to Him!

    • Ivy says:

      Thank you, Rebekah. His grace is sufficient–I have to work to remember that, sometimes. It’s not easy. But nothing is without purpose; He has something fantastic in store for me!

  10. Katja L. says:

    Thank you for this post! I especially liked the part about getting frustrated when people say they’re sorry, and about God making you as you are. One of my lil’ sibs uses ASL for communication, and I find Deaf people are like that too. And we are too, because of my aforementioned little sister. I will be praying for you. :)

    I do have two questions. I hope they’re not impertinent. 1) Does TaekWonDo help you with EDS? and 2) Does one have to do therapy for EDS? I am thinking of making a character have it, so I am interested in learning more about it. Thanks!

    • Ivy says:

      Oh yes, you definitely understand about people apologizing!!! (And so cool that your sibling uses ASL–I always wanted to learn it!)

      They’re not impertinent. :)

      1) No, TaeKwonDo doesn’t help much at all. If anything, it exacerbates the symptoms. Does that mean I’m going to stop doing it? No, because I love it so much. But I do have to be incredibly careful, and I do have to sit out some activities. I guess the only way it helps is it makes my muscles stronger, so that’s a plus.

      2) If you mean physical therapy, then yes, PT helps a lot for managing pain and symptoms.

      Feel free to google it–there’s a lot of information on the web about EDS and all the different types. It would be so cool to have a character with EDS!

  11. Rebekah A. Morris says:

    Thank you for sharing, Ivy. I know God has a plan for your life and He will guide your each step of the way even if you dislocate something. ;) Your stories have blessed me and I know they will be a blessing to others. And no, I won’t pity you because I know God’s ways are so much better than ours, but I will be praying for you.
    *hugs*

    • Ivy says:

      Hehe…yes, I may be a little battered and bruised when I reach the finish line, but I’ll make it!!! :) I’m so glad to hear that my stories have blessed you–as you know, that’s the best thing an author can hear! Thanks for your prayers…I greatly appreciate them.
      *hugs back*

  12. Raechel says:

    Thanks for being brave to share this, Ivy Rose. I hadn’t heard of EDS before.
    I do know what it’s like to struggle with an invisible ‘trial’, though and I agree that it can be hard, and so easy to feel judged and not completely understood by others. I was actually thinking of doing a similar post about why I’m at where I’m at, so I was encouraged by your honesty too.
    I don’t have any conditions that are named – I was never diagnosed or anything, except for having sensory-integration-dysfunction starting at 4 years old. But sometimes I think I could very well be mildly autistic. :P
    I admire you for saying this is who God made you to be and embracing it. I admit I struggle with embracing where He has me, sometimes.
    But yes, thanks for sharing!

    • Ivy says:

      Oh, Raechel, it’s so hard to have unnamed conditions!!!! That’s even harder than knowing what it is! My bleeding disorder (and EDS) went unnamed until last year. 18 years of not knowing. I get it. I’s hard.

      I’ll be the first to admit that it’s not always easy to embrace this broken body of mine. There are a lot of times when I wish I could switch it out for one that works properly. But that’s not what God wants me to do right now. I would heartily encourage you to do a post about where you are right now–it’s important to know what kind of support system you have among your readers. It’s not easy to share these things…I know…but it’s worth it.

      I’ll be praying for you! *hugs*

  13. Abigayle Claire says:

    Gosh. I’ve read through this whole post three times now. I can’t even imagine. I’m so proud of you for making yourself vulnerable and sharing with us all. I really appreciate knowing because it does raise awareness, sensitivity, and perspective. I had heard the name for EDS, but not what it meant, I suppose. I honestly don’t know how you do it, but I’m SO proud of you for living your life with courage despite what may try and slow you down. I’m eager to know what the “specific reason” is too :D And I can’t wait to meet you in person this summer!! :)

    • Ivy says:

      Being vulnerable is hard for me… :/ But yes, I want to raise awareness, not only for me, but for anyone with EDS. Can’t wait to meet you this summer, either!!!! :D

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