Everyone has heard the analogy of the frog in boiling water. I don’t know how true it is, but I use it a lot. Especially to describe chronic pain.
If you drop a frog in boiling water, he will jump out because it feels hot, but if you put him in cold water and heat it slowly, he will cook because he will not feel the temperature rise.
When I was a kid, my doctor told me I would develop arthritis one day, but I didn’t really understand what that meant. I was pretty active despite my disabilities. I lived in a city and walked everywhere to save money on public transit.
Then the Pain Started
Then I started having trouble getting out of bed in the morning. The doctors diagnosed my condition as osteoarthritis and told me to live with it as long as I could and then they would replace the joints. I did everything they suggested. I lost 40 pounds, cut back on walking and looked for other forms of exercise. Everything I was supposed to. I even took the anti-inflammatory and pain killers if it got really bad.
The first year was tough, learning to adapt to these new rules and limitations, but I did. Then things settled into a routine.
I lost ground so slowly I didn’t even notice. First I couldn’t bend down to pick up a lost pencil, then I couldn’t stand for long periods, eventually I could barely walk a block. Some days it took a cane and a few codeine to get me to work, but I still figured I was fine.
Then I got pregnant, and the pain wasn’t as bad, but my abilities were. By the third month I was using a walker, and by the sixth month I was giving in to disability leave and a wheelchair. When my daughter was four months, the hormones wore off and the pain returned. But most importantly, I couldn’t walk without her stroller.
I went back to the doctors, and they confirmed it was urgent, my femur had started to collapse.
Fast forward three surgeries and two years of recovery and the pain is almost gone. After a decade, I feel almost normal, better than normal for me. I can’t remember ever experiencing a day without pain and now I sometimes get several in a row.
And I realized something.
I realized what the pain had cost me all of those years, what I didn’t even notice at the time.
- We stopped traveling; I love to travel and I learned to hate it. The walking, the standing, the waiting. Or even worse these days is being dependent on the airlines with walkers and wheelchairs.
- All I ever did was work. I loved my job, but to do it and do it well, it was all I had time for. Once I managed the day and the commute, I was exhausted. It took every evening and most weekends to recover and restore enough energy to go back to work.
- I stopped talking to people. I became terrible at keeping in touch with the people I love. Partially because I am a loner by nature, I go into hibernation and cope alone because it is how I handle things. But because I was always healing, I rarely reached out and connected.
- I started to feel boring. I don’t know if others saw me that way, but I dreaded having to make conversation because I didn’t feel interesting. There wasn’t enough going on in my life to talk about, at least that’s how it felt.
- I became a dimmer version of myself. After my recovery from surgery, my mother commented that she had forgotten what I was like before the pain. That it was like someone had “dimmed my bulb”.
The Cost of Chronic Pain
Pain is a peculiar and all-encompassing thing. Chronic long-term pain especially.
Pain Is Exhausting.
It takes a lot of energy for your mind and body to process and manage pain. Pain is reflected in your heart rate and in your blood pressure. Pain management is critical in the hospital because people in pain don’t heal as quickly. When we see people sweating or panting because of pain, it should remind us how impacting it is on the body. Pain can even cause our bodies to shut down.
Additionally, your muscles are contracting and spasming, so sometimes you can feel like you’ve run a marathon without ever leaving the house.
And pain makes sleep and rest negligible. Imagine all the effort this takes, and the toll it takes on your body and then you cannot relax or sleep because as tired as you are, the pain keeps you tense and awake.
Imagine you’ve run marathons several days in a row, but you’ve never hit the runners high and then cannot sleep each night when you get to bed, and your tired muscles won’t relax, so they are in a permanent cramp.
Pain Is Depressing
Because pain is so all-encompassing, it can be very destructive to your mental health. When it is happening all you can think about is when it will stop. Even if you can function, it is in a slightly fuzzy haze that interferes with your ability to concentrate. When it subsides, it is terrifying because you can imagine how it is going to feel when it happens again. There is a reason chronic pain sufferers are often on antidepressants or on suicide watch. Suicidal Ideation, the thought that death is the only way out, becomes a very scary thing.
Additionally, because pain can be personality changing, it can often affect our mood and behaviors, turning us into people we don’t want to be.
Pain Is Deceiving
Just because pain is chronic or long term, does not lessen its impact. Often chronic pain sufferers become so stoic that the world around them forgets what they are dealing with and how hard they are fighting to just make it through the day. As a result, people will complain when you don’t want to do things, or when you need special treatment to take part. This is especially hard for chronic pain sufferers who already feel “less than”.
Some people figure that if you aren’t writhing around in pain, you must be okay, that it can’t be much worse than the headache they had yesterday.
Pain Is Individual and Unique
My pain is not like your pain or anyone else’s. Talking to fellow chronic pain sufferers, I realize that pain is very unique and cannot be compared. In fact, the McGill Pain Index was developed by doctors to develop labeling and descriptions for pain. It has 20 categories with over 100 labels. It is important to understand, that each person’s experience is unique. As such, it is impossible for you to decide for another what their degree and acceptable level of pain is or should be.
Pain Beats Drugs (not the other way around)
I’ve always loved the question “can’t you just take something?”, because it is so naïve. As it should be, I hope most people never have to understand the difference between oxycodone and oxycocet. But painkillers only work marginally, and you build up a resistance, and some don’t work at all. And they can have side effects, nasty side effects. So painkillers and drugs are a help, but not a solution.
The Difference Between Pain and Pain Free
Just for some perspective, let me tell you a little about what I notice now that the pain is gone.
- I am up for anything. If I can, I will. I want to walk, climb, swim and explore. If someone wants to do it, I will give it a go, if I can. Now that I am less fearful of the consequences. I don’t have to worry about what the next 3 days will be like.
- I can’t sit still, because I have so much energy, Sometimes I don’t know what to do with myself. I’ve been know to stand up and walk in circles just because I can’t sit anymore. 5 years ago I was the quintessential couch potato.
- I have hobbies now, a few of them; I get bored and I like to try new things. Now that I can learn more easily because my brain isn’t fuzzy and distracted. Learning is fun again. I can read, sometimes I read a book a day just because I can.
- I am friendly, and like meeting new people and making new friends. I’m feeling more confident because I don’t feel like a drudge. And I have the energy to get to know people and to find out about them. I am even getting back in touch with old friends and learning to use Facebook!
- I sleep. Enough said.
- I am dreaming with fewer limitations. Now that my life doesn’t revolve around mitigating my pain, I can imagine possibilities I haven’t imagined in years.
So here I am 28 again. 15 years after my arthritis diagnosis I am a kid again. I enjoyed my life and made the best of my circumstances during my arthritis years, and I value a lot from that time in my life. Partially because it made me appreciate what “normal” means. It makes me wonder if everyone else felt like this all the time? Were they really this lucky and didn’t even know it? Are you this lucky and don’t know it?
There may be someone in your life who is in chronic pain. They may not be able to articulate it. They may not completely understand it. And if it came on slowly, they may not even realize what it is doing to them. They need all the patience you can give them.