My wife is disabled from a work injury. She has a disorder called Complex Regional Pain Syndrome, or Reflex Sympathetic Dystrophy. It’s a chronic, degenerative disorder that causes extreme pain in an area of a previous injury that is healed. Swelling, muscle atrophy, skin changes and constant burning pain are just a few of the symptoms. It spreads, often to other limbs. Eventually it can spread to her entire body. She’s already on heart medication because of this. She has no use of her right hand. She’s on pain medications, but the pain is never gone. She recently got a spinal cord simulator, which was supposed to help block the pain signal. Instead, it made things worse, and she had it removed. This will all only get worse.
Jen was only 23 when she was injured. Her court case was finally closed last summer, after six years of being treated like a criminal, having treatments delayed, denied, questioned, and going to countless “independent” medical evaluations with doctors who only get paid if they say she is faking it. Friends and family questioned her pain, simply because it’s invisible. Every day is a struggle for her.
But sometimes, on an average day, I forget all of this. There are days when I come home from work, emotionally exhausted, frustrated and drained. And yet she still needs me to help her. On a bad day, she can hardly move from the pain. She needs me to have sympathy, to understand that she can’t do things that she wants to. Sometimes, I have to understand that she can’t go out to dinner, or a party, or for a walk with the dog. And I have to reassure her that I’m not mad or disappointed because we can’t do those things.
Honestly, sometimes I am mad or disappointed. Sometimes I get frustrated that she needs my help when all I want to do is relax. There are even times when I accuse her of exaggerating just because she doesn't feel like doing something. But the hardest part is that I can’t fix it. I can’t make her pain go away, or give her the energy to push a little further. No matter how much I help or comfort, I can’t make it stop hurting. No amount of reassurance can convince her that she will someday be able to care for our future children despite her pain.
I've been asked why I’d choose to be with someone who requires so much help. Why I would choose to plan a life with someone who will need more of my help as we get older. Why I would sacrifice my own desires in order to be home with her. And if I actually talk to anyone about how difficult it can be, I only hear more questions. If I mention how tired I can get, how I sometimes feel like I have nothing left for myself, I’m told to stop helping her so much, to force her to do things even though she’s in pain. I’m told to find someone who doesn't have a medical issue like this. I've had friends ask me if I’m sure I want to spend my life with someone who is in pain. As if these things make me love her less, or somehow make her unworthy of unconditional love. As if she is not good enough, because she has limitations that are outside of her control.
She already feels she’s of less value than others. That she’s damaged and broken, worthless to society and to others, because of the things she can’t do. And if I show even the slightest annoyance, the smallest amount of disappointment or frustration, it only confirms this for her and for others. I know sometimes I fail, and I make her feel worse.
I get tired and frustrated. I feel resentful of her injury and illness. I feel stressed and drained. Sometimes I need a break. But none of those things take away her positive qualities or how much I love her. Nothing can take away the fun we have together or the wonderful, fulfilling relationship we have. She is an amazing, inspiring person.
I often feel alone in the struggle to manage my stress. It can be hard to find people who understand, who don’t judge. But I would never change it. I’m so glad to be married, to spend my life with this beautiful, strong, selfless, and yes, sometimes tired and physically limited woman. Together, we will fight against the CRPS, and we will not let it ruin us.