20 Things People With Chronic Pain Want You to Know
To be diagnosed with chronic pain, one must experience pain for longer than three months.
Right now, if someone were to hand you a survey which asked when you last suffered from chronic pain, and you were able to answer “never,” count yourself lucky as 100 million Americans are not able to say the same. When doing the math, this number is greater than those dealing with diabetes, coronary heart disease, stroke and cancer combined. That’s huge.
So, with such a high number of people coping with such a devastating illness (maybe even someone in your life) here are a few things they might like you to know so you can better understand the realities of this condition.
1. This is not just “in my head”
As humans, part of the empathy process involves having visual cues to provide understanding for what someone is dealing with. Therefore, when trying to figure out what life must be like with chronic pain, this process might prove challenging, as we don’t always see something to which we can relate.
It’s this missing validation that may contribute to a lack of understanding of how much the person really is suffering. In the case of chronic pain, give someone the benefit the doubt and know that just because you can’t see it doesn’t mean it’s “just in [their] head.”
2. Constantly dealing with pain is exhausting
There are many reasons why pain causes extreme fatigue. One of the most obvious is that it makes it very challenging to get a good night’s sleep. Feeling tired often makes the pain worse, and the cycle just spirals from there. Plus, even if a chronic pain sufferer is sleeping normally, many pain medications can cause drowsiness.
Our central nervous system is constantly processing the pain-related signals travelling throughout the body. This means the brain of a chronic pain sufferer is always “on,” and this in and of itself is entirely exhausting. As if all that isn’t bad enough, add in the fact that many chronic pain sufferers find their muscles are constantly tensed in response to the discomfort they’re experiencing.
3. Chronic pain doesn’t affect just one part of my body
Chronic pain is often felt throughout the body. To give just one example, it often causes aching and stiffness in the joints and the muscles.
Since pain’s effects are so extensive, it alters many of the actions non-sufferers take for granted. Getting out of bed, walking to the bus stop, carrying heavy groceries, and hugging a loved one are all seemingly simple everyday tasks that can become excruciating or even impossible for someone experiencing chronic pain.
But it also takes a toll on one’s mental health. Read on to find out how…
4. Chronic pain can cause feelings of depression
…and depression can cause chronic pain. Chronic pain sufferers really can’t catch a break.
Constantly coping with pain in one’s body often, over time, wears someone down. Not being able to do the things you enjoy, work at optimal productivity, and interact easily with the people you care about most, can all play a hand at causing one to feel down and hopeless.
There are physical reasons as well. According to the Harvard Medical School “brain pathways that handle the reception of pain signals…use some of the same neurotransmitters involved in the regulation of mood.” When there is dysregulation in one system, the other appears to be affected as well, resulting an exponential negative effect on one’s mood.
5. Sometimes I’m just not up for getting together, but don’t give up on me!
From points 3 and 4, it’s understandable that someone dealing with chronic pain can’t necessarily head out to the movies, go grab a glass of wine, or join your intramural baseball team this summer. It’s an unfortunate, but well-known fact that chronic pain causes social isolation.
But that being said, having people around who understand this fact and still keep trying is incredibly important to remind chronic pain sufferers that they are loved. So please don’t take it personally – it’s the pain making them say no, not you.
6. Your suggestions are appreciated, but not helpful
In the world of never-ending-access-to-information many of us feel that with enough work, we can learn pretty much a degree’s-worth of knowledge from the internet. Or perhaps there’s someone on social media/your great Aunt/a classmate from grade 2 who dealt with chronic pain in a myriad of effective ways, all of which you want to share with your chronic pain suffering loved one.
Your heart might be in the right place, but your suggestions likely aren’t helpful. Trust that although you might believe you’re acting in your loved one’s best interests, relentlessly offering suggestions isn’t helping and is probably more confusing and overwhelming than anything.
7. Please don’t second-guess my decisions
If someone you care for is dealing with chronic pain, it’s understandable that you’d want to do anything to help. Maybe you spend hours on our aforementioned friend, The Internet, Googling the latest therapies or results from clinical trials currently taking place.
As much as these demonstrations of care mean to the sufferer, having anyone second-guess the steps they choose or the journey they decide to take for their health can be incredibly annoying in an already challenging and exhausting situation.
8. Please don’t second-guess how I’m feeling
Having someone tell you that what you’re feeling, thinking or experiencing isn’t true or valid can feel insulting to anyone. But for those with chronic pain, telling them that what they’re dealing with shouldn’t be “all that bad” or cause the difficult emotions they’re experiencing can also be incredibly demeaning.
Since none of us can transport ourselves into another person’s body and mind, it’s ill-advised to think you have a better idea of how they feel as well.
9. I’m not lazy
As we’ve learned in number 2, dealing with chronic pain can take everything out of a person. So, if your friend with doesn’t work out like you do, clean their house weekly, or volunteer on the PTA committee, it doesn’t mean they’re a sloth and not contributing the way they should.
It takes everything in them to get through their basic daily routine as it is, without adding on anything extra. Don’t force them to deal with your judgements as well.
10. Believe me, I want to work
Just because someone with chronic pain doesn’t hold down a job like you can, it doesn’t mean that they don’t want to. Most people derive a strong sense of self purpose through their occupation. Working also contributes to feelings of self-confidence, self-esteem and self-efficacy.
More than likely, they wish they had a 9-to-5, but they simply can’t. The notion that they’re sitting back watching soaps and eating bonbons à la Peg Bundy (but without the massive `do) is misguided and hurtful.
11. Just because I’m on medication doesn’t mean I’m a drug addict
Oftentimes people who suffer from chronic pain are prescribed heavy drugs, like opioids, which block pain receptors in the brain, spinal cord and other organs in the body. And although they may help, opioids pose a high risk for addiction, as well as causing nausea, dizziness and, as already mentioned, tiredness.
So, it definitely isn’t for fun-in-the-sun that pain sufferers take them. They do so out of sheer necessity.
12. Although I’ve had it for a long time, chronic pain doesn’t just “go away” (nor do I just “get used to it”)
When we injure ourselves, like tearing a tendon in our knee for example, we have severe pain, and possibly experience some of the issues listed above, like fatigue and a drop in social interaction. But in this case of acute pain, the body’s natural ability to repair itself (in addition to physical therapy, possibly medications, or surgery) kicks in and our pain lessens over time.
The body’s physiological response to chronic pain doesn’t work this way, meaning time does not heal all wounds. Unfortunately.
13. Just because I don’t look or act sick, doesn’t mean I’m “better”
Many of us use appearances to determine how someone is feeling. Since chronic pain doesn’t always demonstrate itself as visibly as other diseases, don’t think it’s safe to say that someone is “better” because they’re in a good mood one day, or appear to be moving more easily than usual.
Although chronic pain suffers can experience good days, unfortunately, it doesn’t mean that their disease has gone away.
14. It can sometimes be hard to articulate what chronic pain feels like
How chronic pain affects people can vary amongst suffers, and within individuals themselves depending on the day. Therefore, it’s ill-advised to ask someone to describe their pain, as it might be an ever-changing thing.
Asking how they’re doing, on the other hand, is highly recommended, because it shows that you care!
15. I swear I listen/pay attention/care/remember
As mentioned previously, the brains of those suffering from chronic pain are pretty busy coping with and processing pain signals, in addition to dealing with the regular demands of daily life. If you feel like you have to repeat yourself frequently, or wonder if they’re even listening to you at all, remember that a person dealing with this issue has a lot going on cognitively, and cut them some slack.
Heck, think about all the stuff you’re trying to manage in your brain on a regular basis and how impossible that can feel. And that’s without being in chronic, extreme discomfort!
16. Telling me that someone has it way worse than I do does not make me feel better
Although your intentions might be good, people in chronic pain don’t need to be reminded that it could always be worse.
When you share that your co-worker can’t get out of bed every other day (versus your chronic pain suffering loved one’s one day a week), it ends up sounding like you’re discounting their experience and feel they should just suck it up and deal. There’s always going to be someone who has it worse – that doesn’t mean a person’s pain isn’t valid.
17. Please listen to me if I reach out when I’m having a bad day
People who suffer from chronic pain can also experience depression and social isolation, so if they happen to reach out to you on a not-so-hot day for a listening ear, whenever possible, try and oblige.
That being said, this doesn’t force you into the role of counsellor or therapist, and if you feel you’re out of your comfort zone, it’s okay to say that you don’t feel equipped to give your friend the care they need, but are more than happy to help find resources where they can get it.
18. Please ask us about what’s going on
Due to the desire to not pry, some people steer well clear of discussing anything chronic pain-related. However, since this is likely a major, constant, and even disabling feature in your friend’s life, they likely wouldn’t mind if you asked how things were going every once in a while.
This helps to lessen confusion and fear, as well as the stigma often associated with having chronic pain.
19. We’re not proud of it, but we also suffer from slight FOMO
In the previous points, we have discussed numerous ways coping with chronic pain can alter how one functions in day-to-day life. As this is their reality, chronic pain sufferers come to terms with it in the best way they can. But, as we have all experienced, hearing about the amazing shenanigans others get into – and that we had to miss out on — can be rather disheartening.
So, don’t not talk about what has been going on in your life, but be sensitive to how you talk about it. Read: that means omitting that the experience was “completely life altering” and was the “Best. time. ever.”
20. Please don’t pity me. Just accept me.
As much as you feel for someone coping with such a challenging disease as chronic pain, make sure you don’t let your emotions tip over into pity. No one, no matter what they are dealing with, wants to feel pitied.
Instead, do your best to try and understand, love and embrace them for who they are, just the way they are. No strings attached.
Lauren Brown MSc. WWHP, is a certified Health & Wellness Coach who loves teaching about all facets of health and wellbeing. Much of her time is spent in workplaces, helping empower employees to get healthy through the wellness programming initiatives and educational sessions she delivers. Please see www.inspiringhealth.ca for more information.