In this time of stillness, I have been doing a lot of processing. It is Ehlers Danlos Syndrome awareness month, and in this month and time where I am doing really well physically, I am pondering where the Lord has brought me from. I share a lot about EDS. From the beginning, I wanted to raise awareness for what this rare disease is really like, but as my condition worsened and I began to see how little people and the medical field knew about it, it lit a fire under me to share even more so. That is why I share these facts, all these things that I share so that maybe one more person can be helped. I want to share so that those with EDS know that they are not alone and they are not crazy. I want to share so that maybe one less person has to go through what I went through. I want to be real, but in that realness, I don’t want you to feel bad for me. I am not asking for pity. Yes, this is hard and it sucks, but I have learned more than I could ever put into words from it, and I know that I was knitted together fearfully and wonderfully by God with EDS.
A year ago, my shoulder was in its socket for the first time in six weeks and five days. Severe muscle spasms like nothing we had ever seen in my pec ripped my shoulder out of socket and held it in that position for all that time. At that point, I was no stranger to pain. My shoulder had been lax and came out of socket easily, but the spasms gave me no break. There was no relief, no break, no nothing. I had struggled with the spasms a bit before. They would pull my shoulder out, and then it would relax and drop back into socket and then pull and so on for thirty minutes or so and I would be in TONS of pain for that thirty minutes, but it always went away. Then one day, it didn’t.
I hope yall never have to experience a dislocation, but if you do, you know that pain. It is completely sickening. You know those football players that dislocate something and start rolling across the ground and screaming? That is what a dislocation feels like. Nothing else is going on, nothing matters except getting some relief. Your mind is constantly searching for a way out and you can focus on nothing. My body was doing this to itself and I had no control. My pec muscle was shaking from exhaustion, but wouldn’t let go. That is still the most terrifying feeling I know to this day.
We immediately went to a doctor asking for help. I remember sitting in that waiting room with Mama and my awesome physical therapist rocking back and forth because I couldn’t hold still for the pain. I remember thinking, hoping, and begging the Lord to have this doctor do something or know something. I remember sitting there in the room with the doctor, feeling like he wasn’t taking this seriously. I don’t think I said anything the whole time. It was all I could do to fight the pain and not be the one rolling in the floor and screaming in pain. He prescribed something and then said, “I’ll see you back in four weeks if this doesn’t work.” I remember screaming inside, “If it doesn’t work, I don’t think I can live like this for four weeks!” It didn’t work and we went back sooner because I couldn’t take it. He then suggested a motivational speaker or a psychologist and referred me to someone else.
The next doctor looked at me and said, “I have never seen anything like this.” and scratched his head. He said he wanted to help and referred me to someone else to get their approval on a treatment option. After going to the doctor he referred me to, who told me I was purposely making my pec muscle dislocate my shoulder, we called his office back. He dropped my case.
All that time I was rarely still; I couldn’t be. I cried a lot. My only relief was sleep, but it still hurt in my sleep and it was so so hard to go to sleep, but eventually, my exhaustion would usually win. I would dream that someone was stabbing my shoulder or shooting it or anything that might hurt, and it actually hurt and I often cried in my dreams.
My parents would stay up at night researching doctors or anyone who might help just so that they could tell me that they had someone to call in the morning so I would have some hope.
It was so terrifying. I was afraid of having to live like that for the rest of my life. I could barely function. I couldn’t sleep, do school, or anything I loved because my mind was so overwhelmed with processing extreme amounts of pain.
After that first appointment, I learned something: I couldn’t hope in things of this world. That sounds like such a good lesson, and it is, but it felt so ugly, so broken, and so desperate at that time. And it was until I learned to fully hope in Christ. I was still so desperate and I could often barely cope with the pain, but I knew for the first time the joy of truly hoping in Christ. Even today, I can’t say that as deeply and truly as I could then. That was something I only knew to full extent when I had no other hope.
If you saw me during that time, you probably know, I still smiled most of the time. That smile wasn’t there because I wasn’t hurting, it was there because I knew Hope, it was there because I had been so disappointed with the things of this world that I had learned of the Hope that cannot disappoint. That smile was there because I knew that Christ would not disappoint me and that He would fulfill all of His promises.
That was the beginning. It has been a hard year since then. I’ve been through a lot. That hard has been my reality often.
I have not walked into a doctor’s appointment since then hoping in that doctor, but hoping in Christ, the Hope that does not disappoint. I cannot be disappointed like I was that day. I prepare myself for the worst from that doctor and know that it will be ok because we are almost home, and this is not how it ends. The words of For King and Country from the song “Need You More” come to mind here and were often exactly how I felt and prayed.
Prepare for the worst
Hope for the best
Won’t You steady my heart
For whatever comes next?
I am not always disappointed in doctors either. I have met a couple that have changed my life, even if they couldn’t help, but because they did everything in their power to.
I still cry often, sometimes tears of pain, often tears of joy. Now my shoulder is in socket, I can walk well, and my pain is minimal. I have no doubt more hard will come. Hard comes with life and especially with EDS, but I have my family beside me, some incredible friends and church family, and the Hope that does not disappoint. He has a sovereign purpose for every ounce of pain we suffer. Knowing that does not always make the pain better, but it makes it worth it.
This my life with Ehlers Danlos Syndrome, and it is a beautiful, hard, and worth-it blessing.