The Other Side of Chronic Pain

By Donna Corley, Guest Columnist

As I contemplated how to begin this article on a subject that has troubled me for some time, I continue to hear Paul Harvey’s famous tag line, “And now you know the rest of the story.”

I’ve noticed for a while that when we share our stories about life with chronic pain, we often focus on the physical struggles and lack of proper treatment, but leave out the emotional side. We rarely tell anyone how vulnerable and afraid we feel, especially our families and doctors, for fear of them thinking we are faking it or even a little crazy.

I’ve hidden that side of myself very well -- as have many of you -- and for good reason. But in doing so, I’ve only told half of my story and only shared half of who I am.

It is very hard to show vulnerability to anyone because we are judged by so many people. No one wants to be ridiculed for how they feel.

We should not be made to feel this way. None of us asked for pain conditions and diseases. Yet, we are shunned and doubted, and made to feel like we should not talk about the emotional side of our journey or the fear of “what comes next.”

That is the secret we hide from the world.

DONNA CORLEY

My story is a little unique in the sense of how long it has been. My journey started my senior year of high school, when I broke my back in a bad car accident. I was unaware that one accident could manifest into conditions called Adhesive Arachnoiditis (AA) and Tarlov Cyst disease. It took 23 years before I was properly diagnosed with AA. I still have moments when I think, “If only I was diagnosed sooner.”

I think there’s a big misconception about patients who suffer with chronic pain conditions, especially those with no cure. The public doesn’t realize that there is more to us than our pain. But if we don’t talk about our emotional torment, how could they know?

Living in Fear

Being a mother brings worry naturally. When you add massive pain with weird symptoms that make you feel like an alien has taken over your body, well that’s fear. Full-fledged, terrifying “I’m dying” fear. Fear brings anxiety, which brings doubt, and this can bring on depression. And it all started with pain no doctor could explain or diagnose, let alone treat!

The medical community is still being taught that Tarlov Cyst isn’t worth looking for in an MRI because they believe the disease doesn’t cause pain or other symptoms. That’s not true in my case at all. I went years before Tarlov Cyst was diagnosed and only because part of my pain couldn’t be explained. Even then the physicians refused to admit the Tarlov Cyst was causing any symptoms.

I can remember when my children were little having anxiety so severe that I would hyperventilate. Fear gripped me worse than the pain. Fear of dying and leaving my children. Fear that I had something terminal. No doctor wanted to dig deeper to find out what was wrong with me. My pain would be so severe at times it felt as if someone was ripping my spinal cord out, yet I kept this to myself.

I never told anyone the extent of my pain for fear of people thinking I was exaggerating, or worse, that it was all in my head. I quit driving for several years because I was scared my pain would become so severe I wouldn’t be able to make it home.  

Looking back, I see how pain ruled my life to the extent that it brought on major anxiety. I missed out on so many things with my children, their school functions, church, ball games, etc., all because of pain, fear and anxiety.

You learn how to hide your pain. Even if it means sneaking off to the bathroom to cry for a few minutes because you are hurting so much. You become a pro at clenching your jaw and smiling through the pain. Constant pain keeps us in a “fight or flight” state that can be very hard to manage alone.

I’ve seen doctor after doctor more times than I can count. They would all ask me, “Why are you here?” I finally stopped going. I stopped asking my primary care physician to refer me. What was the point? Physicians used to look outside the box to find answers, but it seems that “patient centered care” is gone. I had a doctor tell me a couple years ago that he couldn’t help me because I had too many health problems!

Doctors can’t always fix us, but their words and actions have lasting consequences, and some are just resoundingly bad.  Many patients have developed severe emotional trauma from being bullied by physicians who talk down to them like they were stupid and insignificant.

There is another important subject that everyone shies away from, even in patient support groups, and that’s sex. I can understand it being a sensitive subject, but it affects more patients than people realize. Whether it’s erectile dysfunction, the inability to have sex because of pain, or the inability to have an orgasm, these conditions can tear marriages and relationships apart. But the subject is not often discussed with physicians or even family members.

I had to give up a job and career I loved due to chronic pain and had to find a new purpose. That was a very hard part of my life. First, it was hard accepting that I could no longer work, and then it was hard accepting that I would be in pain for the rest of my life.

I thought it was a death sentence when I was first diagnosed with AA. Then I realized, “Hey, I’ve had it for 23 years and I’m not dead yet.” Being a quitter isn’t in my DNA, and I love my family too much to quit. I did a lot of praying, asking God, “Why me?” It was like he said to me, “I need you here.”

That’s truly when I began to have a passion, a drive to fight for awareness, to help other patients get a timely diagnosis and find new doctors.  Praise God, we have quite a few great ones, but we need more.

No one should be made to feel like they are crazy, ignorant, insignificant or lying because they are in pain. I’m still here trying to love the life God has blessed me with. Yes, I see my life as a blessing. If I had not been diagnosed with these diseases, I wouldn’t know how to empathize with others in pain.

We as patients should be able to discuss our fears and concerns with our physicians and families without fear of negative consequences. It is past time people quit condemning those of us who suffer in pain because of the way we feel.

Donna Corley is the director of the Arachnoiditis Society for Awareness and Prevention (ASAP) and creator of the Tarlov Cyst Society of America. She lives in Mississippi with her family.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.