Millions of people live with chronic pain every day in the US, and they struggle to do basic day-to-day things like getting dressed and going to the shop. Despite their constant pain, their voices are rarely heard by the media because they look ‘normal’ and it is difficult to see the cause of their pain.
Here are 20 things that people in chronic pain can relate to:
We try very hard to look ‘normal’
People often say to us that we don’t look sick, but it takes a lot of effort to look normal. We often have to nap before going out to deal with the exhaustion, and we normally take pain meds before meeting up with people.
The pain won’t pass in a few days or weeks
This isn’t a cold or the flu, and it won’t go away in a few weeks – we may live with the pain for our whole lifetime.
It’s not all in our heads
[Tweet “We are not hypochondriac’s; just because you can’t see the cause of our pain doesn’t mean it isn’t there.”]
We have dreams and goals
Just like anyone else, we have passions and dreams that we would like to achieve in our lives. We are not defined by our illness.
We are not making a big deal for no reason
We are probably in more pain that you think we are in. It can be pretty difficult to understand chronic pain, and we don’t need your sympathy – we just want to know that you understand our situation.
Sometimes it is impossible to get out of bed in the morning
Some days the pain is too bad to get out of bed, but we don’t let that get us down. In fact, we will probably Skype our friends or partners so we can have a giggle to take our mind off the pain.
We hate being called lazy
Every job is twice as hard if you’re experiencing chronic pain, so we don’t feel lazy – we feel super accomplished for getting dressed and going to the shops. Everyone experiences different challenges in life.
Chronic pain doesn’t become less painful with time
Pain doesn’t become less painful over time, but you become better at dealing with the pain. I am still in pain; I’m just not letting it rule my whole life.We don’t always have enough spoons Christine Miserandino, a woman with lupus, created the ‘spoons’ analogy to describe living with invisible pain.
When you have chronic pain, you start each day with a certain amount of spoons.
Every task, like making a sandwich, takes a spoon away from you. Once you have run out of spoons for the day, you cannot complete any more activities – your pain is too much. This analogy helps us to complete our tasks without exerting ourselves too much. [Tweet “PLEASE take the time to read “The Spoon Theory” by Christine Miserandino this is probably the BEST essay to help you understand chronic pain!”]
If we don’t work, it is because we can’t
We don’t shy away from work; in fact, we would do anything to be healthy and able to work full-time. Sadly for some chronic pain sufferers, this just isn’t an option.
Just standing in queues is uncomfortable and painful
Having to hold your body in a certain place for even a few minutes can be extremely tiring and painful, and sometimes we have to ask our friends and families for help.
Good days do happen
Some days we wake up feeling better than normal, and we get super excited! Normally we will try to be productive and social on these days, because we don’t know when the next good day will be.
So do bad days
Some days are very painful, and on these days even going to the bathroom is a difficult task. On a day like this, brushing your teeth is a huge accomplishment!
We feel guilty about not always replying to our friends
Pain can be mentally exhausting, and sometimes it means we feel too tired and ill to reply to our friends. This makes us feel bad – we love our friends and we hate not replying, but thankfully our friends don’t take it personally when this happens.
We are so thankful for the friends and family who are there for us
Often we have to ask our loved ones for help with tasks like cooking and shopping, and we are so grateful for the help. Our friends are more than just friends; they are lifelines and saviours.
Medical help can be frustrating
It can take years to diagnose chronic pain due to a lack of training, and when we find an understanding doctor, we try to keep them in our lives for as long as possible.
We don’t seek drugs – we seek pain relief
Sometimes chronic pain is treated with medical marijuana and opioids, but that doesn’t mean we seek drugs. We seek anything that will help us to control and manage our pain.
We don’t need advice (unless you have chronic pain yourself)
We really appreciate people who are trying to be helpful, but it can be mentally draining to repeatedly discuss the same pain-management methods. We always look out for ways to help manage the pain, so the likelihood is that we have already tried most suggestions.
We hope to heal one day
We don’t want to live our whole lives in pain – we want to heal and get better. We will always look out for answers and cures that could change our lives
Love and support helps us to keep going
From strangers and co-workers, the little gestures like offering to help with our bags can really help to make our lives easier.
Medical searches on Google
When you do a Google search for certain medical conditions, you can learn about their symptoms and treatments. This includes information from medical doctors about how common a condition is, whether it’s critical or contagious, the ages it usually affects, and more.
This article is intended to help “Non-Spoonies” understand the Spoon Theory
For the millions of people in the world living with chronic illness, it can be difficult to explain your condition to others. When people can’t see visible evidence of illness they may doubt your pain and experience. This is the everyday frustration of a chronic illness sufferer: not being understood.
For Christine Miserandino, it was her best friend not understanding her experience having lupus that drove her to come up with the explanation used by chronic illness warriors around the world: the spoon theory. Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability. – See more at: ButYouDontLookSick.com
Using spoons as a metaphor for energy, she explained that each activity she completes in a day “costs” a certain amount of spoons. Once she runs out of spoons, she has no more energy left for that day.
As the theory goes, a typical “healthy” person has a high or unlimited amount of spoons and doesn’t have to worry about running out. However, those with chronic illness must pace themselves and plan their day according to the amount of spoons they hold.
Chronic illness sufferers across the globe are now using Christine’s theory to help others better understand what they’re going through.
The spoon theory has resonated with so many that there is now a following of people with chronic illness who refer to themselves as “Spoonies,” who connect with each other and share experiences through social media.
Read on to learn more about the spoon theory and how to join the conversation.
