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.
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)
(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.
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.
Okay. Well. Kudos if you’ve made it this far.
Now. Your turn: