The journey of getting my chronic pain seen as a true problem in my life started back when I was 14 – almost a decade ago. I didn’t know how to explain what I was experiencing in my body, and the first doctor I saw didn’t listen well or ask the kinds of questions that could have gotten the right information out of me. I was so frustrated by the experience that I didn’t bother trying to talk about the pain again for years; I stuffed it in a box somewhere in my mind. Eventually, it became too much to fit in a box, and the process started once again. Because of this, it took 6 years to get any sort of diagnosis, understanding, or relief. It took me 9 years to get to Mayo Clinic’s Pain Rehabilitation Center, where I learned how to not let the debilitating pain I experience take over my life anymore.
I no longer talk about my pain much because it’s under control and, to be honest, I’ve got far more interesting things to talk about. However, at the beginning of my journey, it was far from manageable and I needed help. Communicating pain is one of the most challenging things I’ve ever had to do. Because of this, I wrote this post about communication for my Tumblr a while back so that no one would have to go through the same kinds of frustration, seemingly endless waiting, or feelings of hopelessness and being misunderstood that I did along my journey. You deserve the best kind of care there is. May you communicate strongly and have someone listen to you the very first time you speak.
Over 100 million Americans live with chronic pain, and 25 million of those live with debilitating pain. Even though it’s quite common, anybody who’s ever tried to explain their experience of bodily pain to someone else knows that it’s difficult. Pain is subjective to each person, and absolutely nobody can feel our physical pain but us. The phrase “rate your pain from 0 to 10” leaves much to be desired. This doesn’t mean that we shouldn’t try to communicate to others that we are having a life-changing problem, though; this just means that we should learn how to communicate about it effectively in order to receive the most empathy, compassion, and appropriate treatment(s) possible. How do we do that?
- Figure out if your pain is acute or chronic.
Acute pain is short-term and often intense. Chronic pain lasts for longer than 3-6 months and can be just as intense, if not more so. Try to journal and see if you can list all you know about your own pain’s history, and go into your appointment with this list (as well as a list of your questions and concerns) so that you feel confident and don’t forget anything important to you. How long has it lasted? Is it the result of a specific event that you can pinpoint?
- Find vivid phrases to describe what your pain feels like.
When I was first going in to see a doctor for chronic hip pain, I found the phrase, “I feel like I just slammed my hip against a table.” Easy to understand, as well as almost feel yourself, right? Make it clear that this is something that needs and deserves treatment. Women often get taken less seriously than men when seeking pain treatment, as do racial minorities. Advocate for yourself as best you can.
- Learn the typical words that describe pain (as well as what parts of the body are affected by it).
Sometimes, in dealing with pain, you’ll be experiencing different types of pain in different places. Read this page in order to understand what people actually mean when they say they’re having a “dull” pain, as well as other terms like “raw”, “stiff”, and so on. In addition, find a nice picture of the human body on Google, if you’re struggling to figure out the name of the approximate region where you’re hurting. I like this one because it has both the Latin and the English words, as well as the front and back of the body.
- List which everyday activities are compromised by your pain.
Certain pain syndromes, if it turns out that you have a more widespread chronic pain disorder rather than an acute pain, have life activities that are known to be affected in most people who have it. Journal about them. You’re often required to list these on patient intake forms, anyway, so this will speed up your process of filling out that paperwork.
- If you’re science-y, read up on pain.
This is mainly for the anatomy and physiology nerds out there. Two very readable articles from WebMD: Pain basics (1 page) | Pain classifications (3 pages).
- List every single symptom you’re experiencing (even the ones that you think can’t possibly be connected to each other).
Think about every part of the body. Is anything going on that didn’t in the past? I know that this can be hard, and even distressing, because it can give us a reason to grieve, but as much as you can, push through your discomfort with it. What makes them worse? Better? Bring this list with you to your appointment so that you can’t possibly forget any of them when you’re on the spot. The more your practitioner knows, the better.
- Go into your appointment with a pain scale of your choosing (because not all pain scales are created equally, nor do they necessarily mean the same thing to different people).
What is your pain on good days? What is it on bad days? I personally like the Mankoski Pain Scale because it talks about the daily life impacts of your pain, meaning that it’s far more descriptive than the average “rate your pain from 0-10.”