Thursday morning I watched a documentary originally aired on the Discovery Channel about chronic pain in America, created with cooperation from the American Chronic Pain Association titled Pain Matters. (You can watch it here). I got about 10 minutes into the film when I had to hit pause and run to get a paper and pen. I was so excited to hear people talk about my life in a way that made those who don’t live with pain understand. All I could think about was I need my husband to watch this, I can’t wait to share this with my PCS girls. As the video played on I found myself nodding, smiling and saying “yes!” out loud to my laptop screen. If you’re reading this it’s likely that you either suffer from chronic pain yourself, or you know someone who does. I strongly encourage you to settle in and watch this film, all 55 minutes of it. Here are some of the things that spoke loudest to me.
The number one point that was made several times throughout the film was the concept that people living in pain need validation. Often times the illness causing the pain is invisible and, like in my case, not widely understood. Tragically, people often go years without any kind of diagnosis at all. When the MRI’s, CT Scans, X-rays, blood tests and Ultrasounds come back showing “normal” results, it’s difficult to understand what is causing the pain. Due to a lack of physical evidence to support the patient’s complaint of pain they are often told it’s all in their head, or it’s an emotional issue manifesting as pain.
I’ve been on the receiving end of just this type of conversation. I was advised to seek mental health treatment to cure my pelvic pain because the doctor believed it was the result of an abusive relationship that ended 6 years prior to the pain occurring. It was suffocating and embarrassing and more than anything it made me question myself. Was this pain real? Was it really as bad as I thought it was? With no real evidence to explain it, was there something wrong in my head?
No. There was nothing wrong in my head, and no the pain wasn’t a manifestation of an emotionally disturbing past. Eventually we did find the cause of my pain, but the fact that I was forced to question myself, my own body was it’s own form of crazy making. What’s worse is that I have only been on this path for three and a half years, and on several occasions I have been forced to question myself, my interpretation of my pain. Do I really need to stay in bed today? Are you sure it’s so bad you need to take medication? A stronger person would still get to work today. None of these thoughts are productive or breed any kind of confidence in myself. What’s needed most from spouses, family, friends and -often times most importantly- medical care providers is validation of your pain. “No, I cannot see the cause-yet. But I believe you when you say it is there and I am going to do everything I can to help you through this.” Those two sentences can make or break a chronic pain person’s confidence and hope.
The second thing I took away from Pain Matters is the concept that a provider can only understand the pain in the ways that the patient explains it. Pain is relative, and because of that there is no scientific way to gauge how much pain a person is in. All anyone has to go on here is the body language, the words and the information that the patient provides. This is a tricky thing for me because I tend to not show my pain. I’m not saying that to sound strong or proud, it’s not something I even understand myself. But I am told by everyone close to me that I make it very difficult to tell how much I am hurting.
On the one hand, that’s great because I truly would hate for people to see my pain first and me second. If you can’t tell I am in pain then you won’t be thinking about it when we visit. Additionally, I don’t want my kids to see their mom hurting, or my husband to watch me suffer. On the flip side, this can be detrimental to my treatment. After I was moved from recovery to my room during surgery number 6 I was in excruciating pain. The bumps and jumbling of my tubes and cords on the way from the recovery room to my overnight room was awful and I was barely holding it together as they moved my bed into place. I told the nurse “I am at a 10, I need…..it hurts” no tears, no hyperventilating, I was barely moving. She didn’t believe me. It wasn’t until my husband told the nurse that the only way to know I was hurting was if I said something that she did anything about it.
This ties back to validation, if I say I am in pain, I am in pain. We need to let go of our preconceived notions of what pain looks like and really listen to each other. Every month I go to see my PCP Dr. R for a check in and to go over medications and treatments. At the beginning of every visit the nurse asks me “What’s your pain level right now?” I hate that question. On a typical day I am anywhere between a 4 and an 8. Sometimes it’s tolerable and sometimes it’s not. The American Chronic Pain Association has developed different scales, different ways of asking a patient how their pain is effecting them. These questions include:
*Are you sleeping better?
* Are you more or less active?
* Has your mobility improved or declined?
* How distressing is your pain?
Bingo! That is the BEST question I could ever be asked. Not “What number is your pain?” but, “How distressing is your pain?” If I am able to get through a day while taking frequent breaks and stretching my pain is not that distressing. If I am cranky, shaking my foot, restless, or weepy then my pain is highly distressing. These are the questions I feel providers should be asking their patients. A simple “How are you feeling?” does not dig deep enough into the symptoms. It’s too broad and even as an extremely involved and self aware patient I find it very hard to answer that question. Often times when I am asked “How are you feeling/doing?” by my spouse, friend or doctor my response is “In what way?”
Are you asking if I am happy? I can be happy and still in large amounts of pain. Are you asking if I am tired? Do I have a cold? Are you asking if I am in pain? Or do you want to know how my pain is effecting my life?
This brings me to the third and last big thing I took away from Pain Matters: how pain effects your life. Often times, from the mental stand point we are encouraged to not allow our pain to define us. On the surface this concept is fantastic. It gives power to the patient and teaches us that we are not our pain, and our pain does not make us who we are. This is true, to a point. It is not my fault that my husband has to carry the grocery bags because it causes me pain. That is my condition’s fault.
But the reality is that our pain does define us. It changes our lives on every level. The pain has the power to take away our physical activity level, our sex lives, our hobbies and our jobs. The pain we experience during certain activities can be so staggering that it forces us to never do those things again. This is not because we are weak, or afraid, it is survival. When a person’s pain turns from acute to chronic, they are forced to make decisions every day based on their pain. Can I handle a trip to the grocery store today? Will my body allow me make the long drive to visit my parents? The pain will dictate what kind of exercises I can and cannot do, it will determine how well I sleep tonight and if I do or do not need an ice pack in bed.
There are forms in my files that outline my physical limitations based on what will cause me more pain: “Do not lift more than 10 pounds. Cannot walk more than 100 feet, etc.” These are all things that change how we live our lives and they are all based on our condition. No, our pain doesn’t make us who we are, but to say that our pain does not define our lifestyle, our hobbies (in my case my wardrobe) and our professions would place the blame for our “shortcomings” squarely on our shoulders.
This ties back into the treatment provided to a chronic pain patient. It’s important that providers treat the patient’s entire life, not just the pain itself. It’s important to understand that sometimes what the patient has to give up in order to avoid some of the pain will do more harm than the medications or surgical treatments available. What this means is that when deciding what treatments and lifestyle adjustments are best for a patient the benefits have to outweigh the risks. Yes, pain medication may run the risk of addiction (and other negative side effects) however, if the use of these medications can be instrumental in the patient leading a full and happy life than it is an acceptable form of treatment.
The American Chronic Pain Association describes “A “successful” person with chronic pain [as] someone who has learned to independently self-manage their condition in such a way as to achieve maximum function for everyday life activities while minimizing discomfort and avoiding a bad outcome from treatment.”
It’s a simple concept and a very attainable goal when given the right tools and support. Illness or not, pain or not every single person deserves the right to a full and happy life. You may not always be able to see it, and maybe you can’t understand it, but the very simple truth is that Pain Matters.