carolyn-noelby Carolyn Noel, Webmaster – PAINS Project

Experts dispute the number of Americans living with chronic pain. According to the 2011 Institute of Medicine Report, there are approximately 100 million Americans living with pain. Some experts will say this number is too high – inflated.

So what if it’s only 50 million – or 20 million – or just 1 million? What difference does the number make?

Even if it was only one, it would be one too many! There are real people behind the statistics. Real people with real pain and real suffering who live in the shadows and have to fight the stigma perpetuated in the media that we’re drug seekers, lazy, malingerers, etc., etc.

The truth is that people are suffering and – because the nature of pain usually forces people to limit their activities – they are often unseen.

My Chronic Pain Story

I’m one of those, let’s just say, millions of people living with pain – day in and day out.

On April 23, 2002, I was sitting at a stop light when….WHAM! At first, I was confused and had no idea what was going on. I remember thinking, “How in the world did someone get in here and whack me in the back of the head with a baseball bat?” And then, “Wait a minute. There’s no room to swing a bat in here!”

I finally looked up and saw the car in my rearview mirror and realized that the car was actually under the minivan I was driving. I found out later that the other driver was going 55 in a 35, rear-ended me, slipped underneath the bumper and pushed me into the intersection. There was relatively little damage to my vehicle, but the force of the impact pushed her engine up into the passenger area of the car.

I knew I was seriously injured. I had never felt that much pain before (even in childbirth). What I didn’t know at the time was that I had a traumatic brain injury (TBI). I could not clearly communicate what had happened or how much pain I was experiencing – but no one seemed to notice that there was anything wrong with me.

At this point – I made a huge mistake by having my husband drive me to the ER instead of going in the ambulance. I was concerned that I would be tying up an ambulance that might be needed for a life-threatening condition. The ER doctor took x-rays and told me nothing was broken and if I was still “sore” in 3 days to go see my doctor.

Sore!?! Three days!?! Is this guy crazy? Obviously he wasn’t listening when I told him how much pain I was in!

Years later, I realized that because I wasn’t in an ambulance, because I was walking – despite excruciating pain, because I wasn’t screaming, yelling or crying (thanks to my Marine Corps training) – because I wasn’t acting the way they thought someone in pain should be acting, they didn’t believe me.

The first year was a nightmare. I was in excruciating (9-10 on a scale of 1-10) pain 24/7. My blood pressure was spiking uncontrollably. I had 3 transient ischemic attacks (TIAs – aka mini-strokes). And, the doctors said that my body was in so much pain that my heart couldn’t handle it and I might need a pacemaker. Oh…and I couldn’t walk.

Then – I lost my job, my insurance, my husband left and I had to move back home with my parents for a couple of months. I had to fight for every ounce of care I received and still save up energy for two lawsuits. Pain was my full-time job – only it didn’t bring in any money.

I spent my $7000 savings to rent an apartment for myself and my teenaged daughter for a year and we lived off of $275/month child support to pay the utilities and applied for food stamps. I sold everything that wasn’t nailed down on eBay.

Fast Forward

It’s been over twelve years since that day in April 2002. I still don’t have health insurance – which means I have no pain care. I spent five of those years in a wheelchair and when the doctors said they couldn’t do anything to help me, I found ways to help myself so that I could walk again. My pain is now between 6 and 7 most days unless I overdo it. I use my computer skills and work from home and live in the same cheap apartment I rented all those years ago.

Since I’m walking again, most people can’t tell that there’s anything wrong with me. My pain is invisible. What they don’t know and don’t see is that I have to carefully plan out every day. I only have so many spoons (read The Spoon Theory). I only have so much energy to force myself to go through the day.

When they see me smiling and laughing and participating in whatever activity we’re doing, they have no idea that my head feels like it’s going to explode, my back is in spasms, my whole body aches, and every step I take hurts. And, of course, they have no idea that one or two hours in public is usually followed by twice that in rest to recover from the effort.

[themify_quote]They have no idea how much pain I’m in – and, frankly, since I don’t want their pity, I never thought they really needed to know.[/themify_quote]

But they do need to know — everyone needs to know.

Other people with pain need to know they’re not the only ones. Some of our doctors make us feel like there’s something abnormal about the fact that we’re not getting better. They can’t find a test or scan or x-ray to show them the cause of the pain and they can’t find a way to fix it — so it must be “all in our heads.” I know that they care and want to help us, but I’ve learned that most healthcare providers receive very little training in pain care and they just don’t know what to do.

Some friends and  family members – remembering a broken bone that healed or a surgery and subsequent recovery without complications – can’t relate to the concept of chronic pain. Isn’t pain something that’s tells us about an injury and then it goes away? It’s not “normal” for pain still be there years later.

The experts, medical practitioners, policymakers, friends and family members need to know. We need to tell our stories so that everyone will know and understand that there are millions of us out there. We are not alone!

Who cares if it’s 100 million or 50 million or 5 million? Stop arguing over stats and see the people out here who are hurting and just want one night of sleep without pain, one family celebration that they don’t have to leave early, one day when someone will believe them and help them.

I know I’m not the only one out here living with pain. I’ve spent most of the last 12 years working with charities who help people just like me and I’ve talked to thousands and heard their stories.

What would happen if we all decided that we need to tell them?

Tell the experts our stories. Tell our friends and families our stories. Put a face on pain – my face, your face.