1. We try really hard to look good. We often hear “you don’t look sick” but the truth is that most of us try very hard to pass as normal. We rest before going out and take our pain meds at the optimal time. At times we hurt so much and are tired from trying to play healthy that we feel like laying down right then and there, but we (usually) hold it in until we get home to our beds.
2. It’s not all in our heads. Just because you can’t see it, it doesn’t mean it isn’t there. Our pursuit of healthcare is not driven by hypochondria or need for attention, it’s driven by physical discomfort. What we are doing is looking for something to improve our quality of life, and sometimes the cause of our pain if it is not known.
3. We are not making a mountain out a of molehill. We are actually in more pain than you think we are in. Studies have shown that, generally speaking, people tend underestimate other people’s pain. This may be because chronic pain itself is difficult to imagine, especially if you have never experienced it firsthand. Even those who have experienced similar types of pain in the past have a difficult time remembering it until they experience it again.
4. No matter how long we’ve been suffering for, it still hurts. Having pain for an extended period of time does not give us superpowers to feel it less. However, most people with chronic pain have learned overtime to exhibit less pain related behaviours. So you can never really tell how much pain a person is in just by looking at them.
5. Sometimes we just don’t have the spoons. Spoon Theory is an analogy to explain what it’s like to live with a chronic illness such as chronic pain. Christine Miserandino, a woman who lives with lupus, originally coined the term on her website ButYouDontLookSick.com.
The basic premise is that when you have a chronic condition you wake up each day with a certain number of spoons. Every time you exert effort — by getting out of bed, cleaning, getting dressed — you lose a spoon. When you run out of spoons, that’s it, the day’s activities are done.
Chronic pain can be an exhausting condition and this analogy demonstrates the need to budget and loss of control some people experience. So if we cancel our plans with you, it may be because we ran out of spoons.
6. We’re not lazy. In fact, we often have to work twice as hard to accomplish the tasks that most people do easily.
7. If we don’t have a job it’s for a reason. Some of us just don’t have the spoons to work on top of our activities of daily living. It can turn our pain from bearable to unbearable. Also, most employers are not eager to hire someone that can only work a few hours a week, is completely unreliable, may or may not show up, and may end up leaving at any point during the shift due to pain flares that make being productive impossible.
8. It’s really hard to get out of bed in the morning…and always! But that doesn’t mean we still can’t have fun from bed. So if we can’t make it out you can always bring the party to us!
9. Every minute feels like an eternity when waiting. Whether it’s an hour in a waiting room or 5 minutes in line, every minute drags out when you have to hold an uncomfortable position. It’s not that we are impatient, we would just prefer to use our spoons on more important things.
10. We are not ignoring you. Pain can be very distracting and mentally draining. We try our best to stay sharp and attentive but if we seem not to fully be there please don’t take it personally.
11. We get REALLY excited when we have a good day. Physically feeling good is just about the most exciting feeling in the world cause it means we can finally get stuff done! Its like going on a mini vacation (except for instead of doing nothing we try to do everything)!
12. And get really bummed when we have a bad day and can’t do the things we love.
13. It can be hard to find a good doctor. Unfortunately, most health care professionals have little knowledge in pain management because it is rarely part of their training. We often go through many doctors before receiving a proper diagnosis and wait months to years (literally!) to see a pain specialist for treatment. Also, doctors too fall victim to the cognitive error of underestimating other’s pain, and vary few doctors are willing to take the legal risks involved in prescribing pain pills. So if we happen to find a good doctor who listens and is willing to treat us, we feel like we’ve died and gone to heaven!
14. We are not drug seekers. We are pain relief seekers. Sometimes our medical treatment does require the use of opioids or medical marijuana to keep the pain under control and help us resume to as close to a normal life as we can. We take it just like any other medication. We dislike the side effects just like any other medication. And if we find pain relief from another means, we simply stop taking it, despite months or even years of use.
As the Cleveland Clinic explains: addiction appears to be distinctly uncommon in patients without a prior history of addiction. It’s important to keep in mind that addiction is different than physical dependence/tolerance. Physical dependence can occur with many different types of medications (e.g. beta-blockers), whereas addiction is a psychological phenomenon that is not caused by “chemical hooks” and usually requires a setting very different than that of a chronic pain patient. Unlike street-users, the medical patient is under the supervision of a doctor, is taking the medication in a slow-acting form, and is going home to a life where he or she is surrounded by the people they love.
15. You don’t need to give us suggestions or medical advice. When we vent we are not asking for advice, we just need someone to listen. We do appreciate the thought, but it can be exhausting hearing advice all the time and frustrating when it doesn’t work. Unless we ask or you have chronic pain yourself, it’s best to leave this to the experts.
16. All we really need is your love and support. Sometimes all you can do is just be there, and that’s saving someone’s life!