A friend shared a post with me yesterday that was really good and encouraging. Along with that post the above picture was shown. Immediately I fell in love with it. My friend stated that the photo reminded her of my post where I mentioned my daughter telling me not to hide my scars. I was honored. I don’t know why I’d be excited that a picture of a women battered and bloody in armor would remind her of me. Maybe it’s because as a child I was always known as the weak and sickly one. I liked to imagine myself as being strong and the one people couldn’t live without. I tried to be strong for my dad and help him work on cars, fix and build fences, and tend the livestock. I wanted to be fierce and protect my love ones from all harm. I tried but never got past the stigma of being weak and frail.
I think that probably has something to do with it but I think even more so is the fact I have an invisible, uncommon illness. 99% of people I tell I have Ehlers-Danlos have no idea what that is. If you were to meet me on the street you would never know I was broken because I look “normal”. So on days where I’m hurting too bad to live life it causes a lot of skepticism. Somebody once put it this way, “I think there’s this weird phenomenon in life, specifically in the chronic illness community. It’s a place some of us get stuck in – the in between. A place where you’re too sick to function in the “able world” but at the same time you seem too healthy for the chronic illness world. You almost faint but you don’t. You’re always in pain but it’s relatively tolerable. You’re not bad enough to qualify for surgery even though you’d benefit. You forget everything but you don’t lose time. Your heart rate is too high to be normal but not high enough to be critical. Your blood pressure is low but not THAT low. Your try to find answers but seem relatively okay to doctors so they don’t want to run more tests. You’re stuck in place where you almost wish you were sicker so you could get helpful treatment.” This is exactly where I’ve been at. I can’t tell you how many tests come back normal, or close enough to normal that “it shouldn’t effect you”. I’ve had so many doctors tell me it’s all in my head, or that I just need counseling. I don’t fit in their box so the game of pass the patient begins. I even had one PT tell me after I had my spine fused that “pain is all in your head. For example if you had a broken leg you couldn’t run on it…but if I lion was chasing you, you could run on it then. See therefore pain is all in your head. You just need to tell yourself you’re not in pain.” I hate to admit this but I might have wanted to break her leg to test her theory. Oh, don’t judge. I realized later that probably wasn’t the best response.
The idea that someone could visibly see the battles I fight and the effect of them on me is something I so desire. I want to be seen as a warrior. I’m bloodied and bruised internally but no one can see that. For example, this morning when I woke up my ribs where they attach to the spine was so tight I was having a hard time breathing. I know what you’re thinking, I thought EDS caused extreme flexibility. Because my connective tissue is overly stretchy the muscles have to step up their game and act as connective tissues as well. The muscles can get a little carried away at times and lock things up tight. This morning was really bad. My husband had to push on my ribs and help break the muscles loose. Not a hole heck of a lot of fun, just in case your curious. After those miserable 10 minutes were over my legs were shaking from the pain but I have nothing to show, no bruises, or scars. It makes the pain almost feel like it never happened, that it was all in my head and couldn’t have been that bad. Like what I just went through was a walk in the park versus a battle.
So there’s two sides that war within me on this subject. I want people to see and know what I’ve been through and what I’m going through but I’m terrified to let them in. I try so hard to hide my pain, fears, and anxieties. I want to be seen as strong, independent and able to take the bull by the horns. I hate asking for help. I hate admitting I can’t. And I most especially hate it when my loved ones see me in pain. So why does this photo call to me? I think because she’s obviously fought hard, not given up, but now she looks at peace. She’s at rest. There are times in our lives when we can’t give up, we have to keep fighting no matter how hopeless and exhausted we are. Then there are times for rest, to let the wounds heal and to let those around us minister to us and come along side us. One of the times I’ve had to be the strongest was right after my spinal fusion. I literally couldn’t do anything for myself. I recently saw a meme that said a booty call is when you get a call from your child in the bathroom to come wipe them. Unfortunately there were times I had to give my husband a booty call, and not in the good way. Sometimes being strong means admitting you can’t and that you need help. That can take more strength than powering through it on your own.
I’m very slowly starting to learn that when you enter a battle you don’t do it alone. You pick the warriors you want beside you and you find a commander that you know wants what’s best for you and will guide and protect you. I had a ton of warriors standing around me but I was too arrogant to allow them to come to my side. I am trying to remember to call on them in my time of need and pray they call on me. I try to remember that God, my Commander, is leading and guiding me through the battle. The only way we can be true warriors and not end up defeated is to lean on each other and God through all life throws at us.
Lastly, I want to point out that this doesn’t just apply to the chronically ill. I believe the other group of people in this same struggle are those who’ve been hurt physically, emotionally or mentally by those around them. Please don’t underestimate your wounds and your scars just because they aren’t visible. When you’ve fought in a battle you don’t leave the field unscathed. Don’t give up, don’t quit. We are not alone.