This one’s a hard to write… just beginning to type brings tears to my eyes. A wise person once told me, when this happens, “pause and breathe.” I constantly need to remind myself to do that. So, instead of jumping right in, let’s start there:
I live in chronic pain. Everyday, the pain is there. No matter what I do. Someday’s it is better than others. Other day’s I physically feel like I can’t move. It is real pain. It is not in my head, it is not fake. It is real.
When I was 12 years old, I began having surgeries to fix my hip after falling in a cave. Since then, I have had 11 hip surgeries, including a total hip replacement at just 19 years old. The amount of surgeries I have had is something no one should ever experience. I would never wish it upon anyone. During the process of healing my hips, I was diagnosed with Ehlers-Danlos Syndrome (EDS). It is a rare connective tissue defect, which causes my joints to be very lax and unstable. I am prone to dislocations and other joint injuries. It can cause skin to be soft and stretchy and can even affect the body’s organs. I don’t have any problems with my organs, which I am so thankful for. I was born with EDS and there is no cure for it.
On top of already having poor hips, having EDS affect my other joints. It affects my knees, ankles, wrists, shoulders, all of it. It is painful. I constantly have to remind myself to bend my knees when I walk and be extra careful when I bend or twist a certain way. It hurts.
I live in pain everyday. From the moment I wake up, to the moment I go to sleep, the pain is there. It always is there. I have to take hot baths to help soothe my joints. I sleep with heated blankets as the adjustment to the temperature drops at night does not settle well with my body. I do not do well in cool areas. My body aches 10 times worse.
There are days where getting out of bed seem impossible. Just a few days ago, I needed to call out from work, which is always hard for me to do because I love my job. Other days, I am able to make it through with ease. Chronic pain affects every aspect of my life. It affects me not only physically, but emotionally too. I get tired.
Night time is always the hardest for me. My body hurts, like really hurts. I’ve cried so many tears over this. But let me tell you something, you wouldn’t know I was in pain. I don’t talk about it often nor allow myself to let the pain stop me from pursuing what I feel like I am called to do.
I want to break the sigma of chronic pain. I don’t live on pain medication, nor will I allow myself to do so on my worst days. I don’t lay in my sorrow asking why me? I do what I need to do to mange through my days.
I don’t want others feeling sorry for me, nor thinking that I am incapable of accomplishing a task. You see, I once use to be in a wheelchair and was told I’d never walk again, so any and everyday out of that wheelchair is a privilege. I am grateful for every day I can stand on my own two feet. I am grateful for the littlest of things because I once thought, I wouldn’t be able to do the things I now have the opportunity to do.
Yes, I live in chronic pain, but I am so much more than the pain I am in. Treat me the way you would like to be treated. Invite me to events and allow for me to decide if I can handle going or not. Don’t assume I can’t, and understand that if I can’t go, know that it is killing me to pass on the event. Living with chronic pain, I have to choose where my energy goes and sometimes I just need a break.
Breathe, that was a lot.
If you’re living in chronic pain, please know you are not alone. I know it is hard and you wish you could be “normal” but I promise you, if you allow God to work in your life, you will see beauty again.
This is part of my story; and for the rest of my life, I’ll do my best to use my pain for good.
All my love,
2 Comments Add yours
Child, I hope you don’t mind me call you that, but you sound wise beyond your years. Job is a good book in the Bible, you can cry, laugh and high five as you read it. It and Luke 22 are my comforts.
LikeLiked by 1 person
Thank you!! 🤗 I have spent many months reading over job and praying! Thank you for the encouragement!
LikeLiked by 1 person