5 Things About Chronic Pain We Wished People Would Understand
By: Error
Chronic pain is a misunderstanding to most able-bodied people, who think we, as Spoonies can just turn that area off In our brain, and/or that pain medication brings us from a 10/10 on the pain scale down to a 0/10 when, in reality, a zero on our pain scale would only happen if we were no longer living.
While our pain becomes more tolerable on some days and less tolerable on others (requiring us to take more medication than usual or resorting to any and every possible idea we can think of to relieve the pain), the pain always exists. In the words of Dr. House from the well-known TV show House M.D. “Life is pain. I wake up in pain, I come to work in pain, I breathe with pain. It never goes away, but I will never let it slow me down.”
Alot of Spoonies like us that deal with chronic pain have that same mentality. We do our best to push through it, using all methods within our utility belt to make the pain tolerable, just for one more day, one more minute, so we can keep moving through life. There are days, though, when this mindset and all the tools in our tool belt aren’t working, whether it’s from heating pads to medication, breathing exercises, and/or meditation.
At that point is really where our mental state starts to crumble. We wonder when it will ease up, hoping that tomorrow will be a better day as we cling to our pillows and grit our teeth. Those days, most of us are bedridden or en route to the ER, starving for that small amount of relief we might possibly receive from a physician. Now that I’ve spoken of a few things, to make this blog make more sense to those who aren’t dealing with chronic pain, I’ll get on with the list of five specific things.
We Are NOT Being Lazy
Imagine if you had a big surgery or broken a bone and were in tons of pain. What would your doctor tell you? To rest, lay down, take your medication, and come to the ER if the pain doesn’t get better. Right? Well, imagine living that nightmare daily. Some of us can never leave our beds, and if we do, it’s for brief moments or bathroom trips. We need to lay down, rest, and recover from the constant pain and symptoms we deal with in our day-to-day lives. Overstretching those boundaries does nothing but make the next day even more of a living hell. Also, sometimes rest isn’t even possible; we’re kept awake with pain some nights when our usual methods of relief are not helping as they usually do, causing us to be forced awake, dealing with our symptoms alone. I’ve named this condition myself as “pain-somnia” as a play on words of the condition “insomnia,” so if we need to take more naps when we’re pain-free or at a tolerable level, sometimes that’s the best amount of rest we can get.
The Emergency Room and Other Physicians Offices Are Not Always Helpful.
It’s a 50/50 chance that when a person with chronic pain walks into the sliding doors of the ER that, a doctor will actually assist with your pain levels. Since the opioid crisis, more and more chronically ill people are being denied pain relief within the hospital environment while being labeled as “dependant” or “drug seeking.” While ER visits can sometimes be helpful, most doctors within the ER setting will not treat a chronic condition or pain level and just refer you back to your specialists or primary care, making it all seem like a never-ending cycle of stress, pain, and not having much guidance of what do to next.
Things that may not cause an abled body person pain will more than likely cause us pain.
Simple tasks like taking a shower, folding laundry, walking outside to take the trash out, or even things as small as brushing your hair or teeth can be riddled with pain. Everyone has their limit of what they can or can’t do while struggling with chronic pain, and we take each day with a grain of salt, celebrating small milestones. If you know someone who deals with chronic pain, and you see them shower, cook a meal/eat a meal, or complete something you may think is mediocre, it’s a big deal to us, and we always appreciate those simple words of “I’m proud of you” or “You’re doing a good job.” Positive affirmations give us a little bit of strength to move on to the next day or possibly even another task!
We are always afraid of being a burden.
Chronic pain puts us in a place of vulnerability and makes us question if we’re being a burden or just extra weight to those around us since we aren’t able to complete tasks sometimes or enjoy certain things in life that able-bodied people can. Think of it as you just had both of your arms and legs chopped off, sitting in a wheelchair, and wanting to ask for help, but the more you ask for help, the more resistant and frustrated the able-bodied person becomes. It’s similar to that in a way, because our pain makes us feel helpless in alot of ways. Make sure to acknowledge these feelings to your chronically ill friends and family, assuring them that it is okay to ask for help and that they aren’t a burden. All of us wish we could live a normal life without all the medicine, without all the doctor’s trips, without all the assistive devices, but sadly, we have to ask for help sometimes. Allow us to ask for that help, and be patient with us.
Distraction isn’t always possible.
I can’t tell you how often people have told me, “Just read a book, find a new hobby, play a game, or watch a TV show to keep yourself occupied and distracted from the pain.” Sometimes, those of us who deal with severe pain are also neurodivergent. Having excess stimuli while also being in intense pain can be more of a hindrance than a help. Sometimes, the best thing we can do is sit and grit our teeth. It doesn’t mean we don’t want the distraction or places to go; it just isn’t possible when your pain levels get so high and nothing is working.
While these may be only five things, I can guarantee you there are alot more things Spoonies wish able-bodied people could understand more, allowing us room to be ourselves without fear of hatred, judgment, or anxiety. Those of us who deal with chronic pain have lost most of our friends and family, so our support circle is small, and the majority of the time, we feel trapped within our own bodies. The best you can do to assist someone at that time is support their needs to the best of your ability and research their conditions to see if there’s any way you can help make their day a little easier.
Thank you for reading, and I hope each of you has an amazing day with plentiful spoons, less pain, and the ability to rest.
Much love, Pips,
Error
Greetings everyone! My name is Error, and I am a 26 year old agender person who uses the pronouns they/them. I was diagnosed with Crohns Disease at 14 years old and have dealt with chronic pain and chronic illness since then. I am from New Orleans, Louisiana and I enjoy writing all my experiences for those to have guidance and an insight into what one of my days looks like. Learn more about Error on Our Contributors page.
I literally felt all of these to the core. Especially the not being lazy part. So many people just assume I’m taking it easy for no apparent reason, but in fact, it can actually take such a toll to sometimes even do the most basic things. It’s so frustrating when people just assume…
I have chronic, almost debilitating fatigue and brain fog from long COVID, and what I hate more than the way it makes me feel is the way I feel like it makes me look to other people. It’s the worst part.
I cannot even imagine what it is to live with chronic pain. Thank you for explaining it more.
I live with chronic pain and have since 1997 (spine collapsed). And people do not understand what it’s like unless they’re experiencing it their selves. I’m always afraid of being a burden when I can’t get up. I have to see a pain clinic for the rest of my life.
That perspective is so important. Chronic pain isn’t always visible, but it affects everything. More people need to listen and understand.
Chronic pain can be so debilitating at times. A though provoking post that will sensitize people.
These are very informative and helpful for everyone. I now more understand about what chronic pain is.
I can’t imagine life with chronic pain but I have seen it with my uncle. Hes been in chronic pain all his adult life. Its not easy
No one should complain about anything people with chronic pain. I would definitely argue with someone I see who does that and tell them to stop. I agree with you, just like the doctor say to rest and relax if you have pain, and this is no different.
This is such an important perspective that more people need to hear. Chronic pain is often invisible, and the emotional toll it takes is just as significant as the physical pain.
Whew this post! As a retired nurse I have seen this way too many times from the families of patients who suffered from chronic pain…. it’s unbelievable! As someone who suffers from chronic pain due to an injury, I am so happy I have a supportive family but it’s so sad to see how people are treated, it’s not easy for anyone suffering from chronic pain and others need to be more understanding!!
Chronic pain is such a horrible thing to live with. I agree with everything you said. I wish people would be more understanding on the worst days when just getting up is a painful experience.
I can’t imagine how tough it is when people just don’t understand how you’re feeling/ what your situation is. And not that people should judge, but people do make snap visual assumptions. Thanks for sharing this and being open, the more we talk about it (hopefully) the better it gets x
I am blessed I don’t have chronic pain but what you wrote made so much sense to me…No distractions don’t always work and yes you don’t want to be a burden on anyone…I feel the same way when I am in pain. So true.
This is great information that I will keep in mind. as I was reading your post it makes a whole lot of sense
Your words are so important in helping others understand and offer support with more compassion. Sending love and wishing you (and all Spoonies) more good days ahead! 💜
I appreciate you sharing this in depth blog post as my sister suffers from chronic pain and has ever since she was in her 20’s. I feel for her and she has improved over the years but I wish I could make her whole again as I know for her it is exhausting and she is a never stop kind of person so its difficult. Thanks for sharing 😉
I think this is such an important perspective that more people need to hear. Chronic pain isn’t just about discomfort and it’s a daily battle that deserves more understanding and support.
When you are in pain distraction although it sounds like a good idea doesn’t always have the impact we’d like. It can have a massive impact on various areas of our lives from physical to psychological well being.
I grew up with a parent who had terrible chronic pain. It is awful to have to deal with all the time, and also sometimes because it is an ‘invisible illness’. My mom struggled with everything from doctors to people bullying her when she would park in handicap parking.
This was such an informative article! Chronic pain is so difficult to deal with and reading this was very helpful at understanding it!!
Dealing with chronic pain on a regular basis can be pretty challenging. Thanks for spreading awareness about this!
I have chronic back pain from a childhood accident, and can really relate. Thank yu for sharing this so others don’t feel so alone.
One of my friends has fibromyalgia and has days where she really struggles with simple tasks. Even just walking a short while hurts. She finds it hard as it is an invisible illness.
Oh wow, I’ve never really met anyone who has to live with chronic pain before, so I cannot really imagine what you have to go through. I think it’s so insensitive to tell someone in pain to distract yourself themselves with a hobby…but I hope that those words were said out of concern more than impatience. Hugs to you.
I know people who are suffering from chronic pain and I know it can be difficult for them. We should give them our 100% support and understanding.
This hits home as someone who suffers from chronic pain. It can be frustrating to feel so crappy all the time and even though the people around you are supportive and caring, the fact that most of it is invisible (for me) is… Thanks for sharing, its always nice for people to know they are not alone
One of the things that stood out for me was the invisibility of chronic pain. As you said, just because someone doesn’t look like they’re in pain doesn’t mean they’re not. This misconception can lead to a lack of understanding and support from others.
I can’t imagine people with chronic pain.it must be so frustrating to feel the pain all the time. Thanks for sharing your story.
O really couldn’t imagine living with chronic pain , from someone who is quite fit and healthy and go the gym 5 times a week , I really do need to count my blessings xx
While I don’t have chronic pain, I almost always have a slight headache. I find that it’s somewhat similar, and the headache that I have often would be a lot more to some people but I’ve learned to live with it and through it. I cant imagine having more of whole body pain like some of my friends do.
Was feeling this as I was reading it. Yes, no one understands, there really is no help for the pain. Thank you for explaining it so wonderfully. Hope you had a good day from your felow spoonie, Jen.