Sometimes it feels like I am walking around with a bag of sand on my shoulders. It often feels like there is pain pumping through my veins from head to toe. As if someone has tied all the muscles in my back in a knot, and is constantly tugging them towards the floor. Sometimes I feel like I am walking on fire. Sometimes my neck is in so much pain, I can barely stand to hold my head up on my shoulders. Sometimes my face and head hurt so much, it feels as if I’ve been beat up, or my brain is trying to escape my own head. It is always some combination of these feelings. This is the best way I can describe what my pain actually feels like.
Too many times, I have felt my entire experience of life with chronic pain invalidated by people who reduced it to a number on a pain scale or a certain level of functioning. There are so many ways that chronic pain affects me, beyond the ways others have tried to measure it. I want to talk about them here, for anyone else who has felt this same invalidation. Not talking about them does not make them go away, rather it makes these real and significant challenges feel shameful and lonesome.
Being in pain all day impacts my energy levels, my mood, my personality, my ability to focus, my motivation, my desire to participate in life, how other people view me, and so on. These are some of the side effects of living with chronic pain. All of these things affect the way I interact with others, the way I work and study, and how I feel. Most days I function quite well despite these things. I try my best to keep up with society and other people my age. Even so, it is hard not to be aware of the extra effort required. And when I can’t keep up or I need to call a time out, it is hard not to feel ashamed or inadequate.
Even though I am generally coping quite well these days, I still have days that the negative thoughts take over. A big part of coping for me, is to acknowledge that these thoughts and feelings do exist, without allowing them to consume every moment. One of the best ways I know how to acknowledge them, is to write them down.
One of the hardest parts about living with chronic pain for me, is fatigue. Most times of the day I feel like crawling back into bed. Being so low energy can make it feel like I’m dragging my feet, even when I have something fun or exciting to do. When I have something I don’t want to do, it is only that much harder. I have a hard time staying present when my pain is bad, which can lead me to feel like I am just going through the motions of my day instead of really living it. It is just so emotionally and mentally draining to be in pain all day. It is this constant awareness of my physical state of pain and tiredness. It takes effort to get out of bed when I’d rather not move. It takes effort to focus on things that aren’t my pain. It takes effort to get out of my head and into the present to enjoy my life. And when I feel terrible, it takes effort to look or act like I don’t. Energy is a resource that I now have to accept is much more limited. I need it to spend time with my friends, I need it to spend time with my family, I need it to work, I need it to go to school and study, I need it to do exercise, I need it to do my physio exercises, or other things I need to do to take care of my health. Part of being human is struggling to balance these things, but it is only harder when you are in pain and fatigued. Choosing which things will get my energy each day feels like a lot of pressure. Not only does society put pressure on me to do all of these things, I have high standards of functioning for myself. Sometimes when I am feeling less crappy, I will get over-ambitious and plan to get lots done. Then I find myself disappointed when I can’t follow through.
I only have so much energy, and I should be able to use it the way I see fit.
My pain also seriously affects my mood. Being in pain can make me straight up grumpy and irritable. I do my best to be self-aware when I am feeling like this so I don’t take it out on others. If you’ve ever heard the saying, “If you don’t have anything nice to say, don’t say anything at all”, that is what I sometimes have to say to myself. Even when I am not irritable and grumpy, my pain takes away from how much I can enjoy things. Let’s say I am in a lot of pain, but I chose to go out with my friends anyways. They do help me take my mind off things and I’m having a pretty good time, but I am still so aware of the pain in my body. I feel happy but I just can’t seem to let loose and have fun the way they are. This of course applies to many scenarios. Maybe it’s my little brother’s birthday party, or a family vacation, or my high school graduation. Even when I decide to go to the event instead of staying home, pain just seems to steal pleasure from me, and sometimes, that makes me very upset. I try to use gratitude to get away from this little mental pity party, by reminding myself how lucky I am to be there at all. But sometimes this just doesn’t work. Sometimes I wish I could just be.
Chronic pain is also an amplifier on any other feelings of discomfort. Things like getting sick, not getting enough sleep, a room that is too hot, being hungry, and being sad can just seem absolutely unbearable. It is frustrating to be so hypersensitive.
I am often afraid that people think I am lazy or I just don’t care, which is so far from the truth. I don’t know how much of this is just perceived by me versus how much people pass judgement on me in reality, but that’s how it can feel. It can be hard for other people to understand that my pain is episodic. They will see me do something one day, and not understand why I can’t the next. Or if I can’t do something one day, be surprised that I can another day. It is almost like there is a pressure for me to act more sick than I am, so that when I really do need people to be compassionate with me and believe me, they actually will.
If you live with chronic pain too, you know that we have to think about things that other people don’t have to think about. I find myself thinking stuff like: Should I bring my heat pad to this sleepover? If I go to class, am I going to feel like I need to leave immediately? If I wear these pants, is my pain going to flare up? If I go to the mall now, am I going to have energy to spend dinner with my family later? Should I tell this person I have chronic pain? How should I tell them? Can I do this job without my pain getting in the way? Should I take my classes online? Will I be able to pass university? Will I be able to fall in love? What if I want kids? Will I be able to take care of them?
I share this part of my story, not to be negative, but to be real about what my life is like with chronic pain. If you are looking for tips, resources, or insights that my pain has given me – you’ll find those in other posts. This one is for anyone who just needs to hear someone describe a feeling they can relate to.
I am looking forward to your comments, further ideas and suggestions: the survey will take less than 3 minutes.