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.