Living with chronic pain is a constant battle, especially since it is not always visible to others. Chronic pain consumes my energy and turns simple tasks, such as chores, into an uphill battle. I often hide my chronic pain behind a brave smile, while being misunderstood and underestimated by those around me.
"I hope that this article serves as a reminder to choose words carefully and with empathy when engaging with individuals living with chronic pain."
In this article, you will get a snippet of what it is like to live with chronic pain, seeking to foster empathy and understanding among readers of different abilities. Through the lens of personal experience and the collective voices of anonymous individuals who endure chronic pain, we will discuss ten invalidating remarks that we have faced. Each word serves as a testament to countless encounters where well-meaning yet misinformed people and straight up disrespectful people have hurt those living with chronic pain.
Within these words, you will find not only a mirror reflecting the experiences of countless individuals, but also an outstretched hand, inviting you to step into their shoes. Through these personal experiences, we can fight ignorance and hate and replace them with compassion, patience, and genuine support.
1. "Have you tried [exercise, yoga, essential oils, "natural" remedies]?"
As someone with chronic pain, I can share why this phrase is hurtful. Chronic pain is a complex and often debilitating condition that varies from person to person. While well-intentioned, the phrase "Have you tried [exercise, yoga, essential oils, 'natural' remedies]?" can be frustrating because it suggests that the solution to my pain is simple or that I haven't already explored various avenues for relief.
Living with chronic pain means we've likely spent considerable time and effort trying numerous approaches to manage my condition. Suggesting a specific remedy without knowing the full extent of our conditions can be dismissive of my experiences and the complexity of our pain management journey.
Moreover, when someone recommends alternative or "natural" remedies, it may imply that our pain is not taken seriously or that we are somehow at fault for not trying hard enough to find a solution. This makes us feel guilty and frustrated. Plus, we even doubt ourselves and question whether we are doing enough to address our pain.
Instead of offering unsolicited advice, it would be more supportive to approach the topic with empathy and understanding. Asking open-ended questions such as, "How do you manage your pain?" or "What has been helpful for you in finding relief?" allows us to share my experiences and insights if we choose to do so. Make sure that you have a personal relationship established before asking personal questions like this because discussing chronic pain can be a sensitive and private matter for many individuals. Respecting boundaries and ensuring trust and rapport are essential when delving into personal topics like pain management. It's important to respect our autonomy and the fact that we are the experts on our own bodies and pain management strategies.
Ultimately, acknowledging the complexity of chronic pain and showing empathy goes a long way in fostering a supportive and understanding environment for people with chronic pain.
2. "I know how you feel, I had [insert acute injury here] once!" / “I get tired too!”
The first phrase is offensive because it suggests that this able-bodied person understands the experience of chronic pain based on their past experience with a temporary or acute injury. Chronic pain is typically persistent, lasting for an extended period, and often has a different impact on our daily lives compared to acute injuries. Comparing the two minimizes and invalidates the ongoing struggles we face.
One person writes, “My foot was so destroyed it nearly had to be amputated, and in under a year, the arthritis and the slow, painful death of bones in my feet was already in full swing. I couldn’t stand up for four months due to that and my shattered pelvis. But, sure I guess, your sprained ankle compares” - pending
While everyone experiences fatigue to some extent, equating the fatigue felt by a person with chronic pain to the occasional tiredness of others is entirely dismissive. Chronic pain often comes with a range of physical and mental challenges that can lead to chronic fatigue, which affects our ability to function and enjoy daily activities. The comment inadvertently downplays the severity and impact of chronic pain-related fatigue.
According to one person, “Fatigue isn’t just tired. Fatigue is feeling like your body is destroyed.”
I replied, “Able bodied ppl try to get on the same level as us when we have completely different experiences. It absolutely baffles me.”
3. "Just push through it!"
When someone tells me to "just push through it" regarding my chronic pain, it is hurtful and dismissive of my experience. Chronic pain is a complex condition that affects me physically, emotionally, and mentally on a daily basis. It's not something I can simply power through or overcome by sheer willpower.
Chronic pain is often invisible to others, making it challenging for them to fully comprehend the impact it has on our lives. When we hear the phrase "just push through it," it feels like our pain is being trivialized and invalidated. It implies that we are not trying hard enough or that our pain isn't significant enough to warrant proper understanding and support.
Living with chronic pain requires a delicate balance of managing symptoms, seeking medical help, and adapting our lifestyles to cope with limitations. It's crucial for others to acknowledge the complexity of chronic pain and show empathy and compassion instead of expecting us to "push through" as if it's a temporary discomfort or minor inconvenience.
What we need from others is validation, understanding, and support. Instead of suggesting we power through the pain, it would be more helpful if people acknowledged the challenges we face and offered their empathy and assistance. Recognizing the impact of chronic pain and offering support can make a significant difference in our overall well-being.
4. "Can I pray for you?"
As an individual with chronic pain, the phrase "can I pray for you?" is offensive and insensitive for a few reasons.
First, it assumes that prayer alone can alleviate or cure our chronic pain, which oversimplifies the complex nature of chronic conditions and their impact on our daily lives. Chronic pain is often a multifaceted issue that requires comprehensive medical care, ongoing treatment, and various coping mechanisms.
Secondly, the phrase implies that our pain is solely a result of a spiritual or religious matter, disregarding the physiological and medical aspects of our conditions. It is dismissive of the physical and emotional challenges we face on a daily basis. While we may appreciate the intention behind the offer, it can inadvertently overlook the severity and complexity of chronic pain, making us feel misunderstood and invalidated. Instead, it would be more helpful and supportive to offer empathy, ask how we are managing our pain, or express a willingness to listen and understand our experiences without assuming a single solution.
Here is one person’s personal experience:
One person writes, “someone grabbed me at my previous job and instead of coming to my senses and saying something dickish (y'know, the one thing I'm really good at; not like my body is good for much else) I just stared at her open-mouthed as she prayed for me, THEN had the audacity to smile like she just did me a favor and ASKED ME IF I FELT BETTER.
At least my mouth kicked in, because I told her it's still a birth defect and if anything, I hurt more now because she forced me to STOP moving.
And I might have put a little extra limp in as I walked away. Because, you know, I'm an asshole and a terrible person.”
5. "When are you going to get better?" / "get well soon"
Chronic pain is often a complex and long-lasting condition with no clear-cut timeline for recovery or a definite end point. This type of question or statement assumes that my pain is temporary or fixable, implying that it's merely a matter of time before I return to a state of wellness. It overlooks the fact that chronic pain is a constant companion, impacting our daily lives and well-being on an ongoing basis. It can make us feel invalidated and misunderstood, as if our pain and its impact on our lives are being dismissed and trivialized. Instead of offering support and understanding, these phrases inadvertently reinforce a sense of pressure to "get better" or create a feeling of guilt for not meeting societal expectations of recovery. It's essential to recognize that chronic pain is a complex condition, and empathy and support are far more valuable than expecting or pressuring us to simply "get well soon."
6. "Have you tried therapy?/Did you know pain is really impacted by thoughts and emotions?"
Implying that therapy alone can miraculously alleviate our pain or suggesting that our pain is solely influenced by our thoughts and emotions undermines the reality of our conditions and the daily challenges we face. It overlooks the physical aspects of chronic pain and the various treatments, medications, and interventions we may have already explored or continue to pursue.
Here are some personal experiences:
Someone wrote, “Yes, psychotherapy is basically every doctor's first suggestion (too often even before they've even diagnosed the problem or ruled out acute injury or illness) and yes, most of have been told this many times. It may be news to people without chronic pain, but its something most chronic pain patients are told constantly and something that's often used as a way to blame us for not improving rather than an actual attempt to inform or treat. At best its old news and kind of boring.” - pending
One person writes, “The [healthcare] system will also use patients mental health issues against them, to deflect from treating their patients with the level of care they deserve”
I replied, “I swear I’ve had therapists who use the “trauma is stored in the body line” which is true but I also ended up having arthritis in my back and thank god I didn’t assume that’s all that was”
7. "Your condition is really inconvenient/annoying/frustrating for me"
Chronic pain is an invisible and debilitating struggle that impacts every aspect of our lives, including our physical and emotional well-being. It is not a choice or something we can control. When someone expresses that our condition is merely an inconvenience to them, it dismisses the profound and constant challenges we face on a daily basis. It can make us feel guilty for something beyond our control, as if we are a burden to others. It is important for others to recognize and acknowledge the immense impact of chronic pain on our lives, showing empathy and understanding rather than trivializing it as an inconvenience.
8. "Is there any job/passion out there for you?" / “Just get a job. You’ll feel so much better!”
Chronic pain is not something that can be easily dismissed or overcome by simply finding a job or pursuing a passion. Chronic pain is a complex and debilitating condition that affects every aspect of our lives, including our ability to work and engage in activities we once enjoyed. These comments imply that our pain is somehow a result of our lack of effort or motivation, which is not only inaccurate but also dismissive of the daily struggles we face. It's important to recognize that chronic pain is a legitimate medical condition that requires understanding, empathy, and support rather than oversimplified solutions or suggestions that undermine the severity of our experiences.
9. "But you're so young!”
This implies that our age should somehow protect us from experiencing or expressing pain. It dismisses the legitimacy of our pain and suggests that only older individuals should be deserving of sympathy or understanding. Chronic pain knows no age boundaries; it can affect anyone, regardless of their age. Being young doesn't invalidate the physical and emotional struggles we face on a daily basis. This phrase not only minimizes our pain but also undermines our ability to cope with it. It's important for others to recognize that chronic pain can impact individuals of all ages and to offer empathy and support without judgment based on age.
Here are our personal experiences:
When someone said that someone else commented on how young they were to have chronic pain, I responded with, “I hate the ‘but you’re so young’ shit. Like yeah I’m aware thanks for reminding me”
One person said, “I have gotten ‘You look too young and healthy, you shouldn't ask to sit down on the bus.’ Someone actually was going to call transit police on me once for "lying" about needing to sit down. Another is "You aren't really helping yourself with your pain at all unless it's 100% gone." When in reality, I have scoliosis and physio/massage/weightlifting/swimming only ever really helps manage the pain, not take it away completely.” - pending
I replied, “I’m always so scared to get a wheelchair because I can still walk and stuff. But if I wanna go to a concert, I cannot stand for that long. I’m afraid that I’m gonna get dirty looks from people who think that I’m faking it just to get a better seat or something”
Another person responded, “Did you know that over 90% of people who need wheelchairs, whether powered or not, are mobile. That being said, their mobility is often quite limited.”
10. “You're using it to get out of gym [class]” / “You're just using it as an excuse to not go to school / work.”
Chronic pain is a complex and often invisible condition that impacts every aspect of our lives, including our ability to participate in physical activities or attend school and work regularly. Such statements undermine the legitimacy and seriousness of our pain, suggesting that we are exaggerating or making up excuses to avoid certain responsibilities. It dismisses the daily struggles, limitations, and challenges we face, both physically and emotionally. It's essential to understand that chronic pain is a genuine and debilitating condition that requires empathy, support, and understanding, rather than being dismissed or invalidated with accusations of laziness or dishonesty.
"Living with chronic pain is a constant battle, especially since it is not always visible to others."
Here are our personal experiences:
When someone commented on how many people have said that they use the chronic pain card to get out of things, I responded, “I tried to see if I could be exempt from my PE walking class which is required to graduate and they wouldn’t let me. Meanwhile I had to have an electric scooter to get around campus because my back hurt so freaking bad”
Living with chronic pain is a constant battle, especially since it is not always visible to others. Chronic pain consumes our energy and turns simple tasks, such as chores, into an uphill battle. We often hide our chronic pain behind a brave face, while being misunderstood and underestimated by those around us.
In this article, you got a snapshot of what it is like to live with chronic pain. Through the lens of personal experience and the collective voices of anonymous individuals who endure chronic pain, we discussed how ten remarks that we face are hurtful and invalidating.
I hope that this article serves as a reminder to choose our words carefully and with empathy when engaging with individuals living with chronic pain. Let us strive to create a world that is more understanding, supportive, and inclusive, where those with chronic pain are seen, heard, and valued for the challenges they endure daily. Together, we can build a more compassionate society where chronic pain is met with understanding and where individuals with chronic pain feel empowered and supported on their unique journeys.