This really resonated with me ~ I’ve lived a version of this for many years. (I’m 62 now)
One additional piece I’ve struggled with is how much I’ve internalized it After hearing “but you look like you’re doing fine to me!” for *so* many years, I started questioning myself. Could it really be “that bad?” Maybe I’m overreacting. I must not be trying hard enough.
I’m only recently in a place where medical things are showing up in measurable ways, and I’ve been taken more seriously as a result.
Thank you for putting language to something that’s so hard to explain.
And I’m really sorry this has been your experience. It’s exhausting and often lonely.
Your post spoke to me on so many levels. Because of my chronic pain, I began to believe that the problem was "my perception of the pain," not the pain itself. So when I suddenly developed a life-threatening strangulated hernia it was hard to know to go to the ER, since living with a huge amount of pain just seemed normal :(
The person who assessed me for disability benefits made the same error. Because I sounded like I was managing, she assumed that either my disability wasn’t as bad as I said it was or I was lying. Hence, my benefit was stopped. I have said to others that rather than a telephone assessment, the person doing the assessment needs to observe me for a week and then they would see how limited I am.
Thank you for this. I think it is even worse because we are women. Men’s pain is taken far more seriously whereas women’s is dismissed as “psychosomatic”, a sign of depression and anxiety rather than real pain.
Your birth story sounds excruciating. EDS is awful. I have a possible diagnosis of fibromyalgia, yet another illness that takes forever to be diagnosed.
I have Fibromyalgia (aka 100 problems we're throwing under an umbrella), PCOS and an "unknown" autoimmune disorder that we've spent years trying to figure out what it is. They're finally testing me for EDS. I've been fighting for disability for the last 2 years and they keep focusing on my age not my illnesses and how much it has impacted/ruined my life. I wish they would follow me around for a week too! We're just numbers to them not people they don't care at all 😮💨.
I know. It’s upsetting and frustrating. I hope you get what you need ❤️ I have mental health issues, an eating disorder, long covid/fibromyalgia and osteoporosis but apparently I’m fine 🙄
I’m a hand surgeon, but I often treat CRPS. Pain is a difficult issue to gauge for people that don’t experience it or treat it. Many chronic pain patients are pushed aside not because physicians don’t care, but because they don’t necessarily know what to do. I think some are quick to judgement, like you alluded to in your article (defining patients as drug seeking, etc). But I think most end up eventually defaulting to sidestepping these patients due to complexity and a busy schedule. We like solving problems, but once there is something beyond our scope/capacity, the limit of what can be done from our standpoint is reached. Add a heavy workload with multiple patients and only 15-20min to see each, it doesn’t create a lot of time to problem solve. The system often limits what we can do, and when you combine this with the cognitive load of patient complexity, chronic pain or both, many will throw their hands up in surrender.
So incredibly, incredibly real. I'm so thankful that I don't have to live with constant pain the way my girlfriend does, but my episodes are frequent enough that I've learned to say things like "the pain is only a 3 but my tolerance is at like a 2 right now" - which my loved ones understand, but doctors rarely do.
I actually love that phrasing regarding pain level and tolerance! That’s incredibly helpful for communicating to loved ones who get it. I wish it was more helpful for communicating to doctors but I think a lot more has to change about medicine on a systems-wide level before it would. I’m sorry you and your girlfriend both experience this, too! Sending hugs 💜
I have a fantasy that my doctor is forced to follow me around for a week. Not even to feel the pain but just to SEE the impact 😅
This really resonated with me ~ I’ve lived a version of this for many years. (I’m 62 now)
One additional piece I’ve struggled with is how much I’ve internalized it After hearing “but you look like you’re doing fine to me!” for *so* many years, I started questioning myself. Could it really be “that bad?” Maybe I’m overreacting. I must not be trying hard enough.
I’m only recently in a place where medical things are showing up in measurable ways, and I’ve been taken more seriously as a result.
Thank you for putting language to something that’s so hard to explain.
And I’m really sorry this has been your experience. It’s exhausting and often lonely.
Your post spoke to me on so many levels. Because of my chronic pain, I began to believe that the problem was "my perception of the pain," not the pain itself. So when I suddenly developed a life-threatening strangulated hernia it was hard to know to go to the ER, since living with a huge amount of pain just seemed normal :(
The person who assessed me for disability benefits made the same error. Because I sounded like I was managing, she assumed that either my disability wasn’t as bad as I said it was or I was lying. Hence, my benefit was stopped. I have said to others that rather than a telephone assessment, the person doing the assessment needs to observe me for a week and then they would see how limited I am.
Thank you for this. I think it is even worse because we are women. Men’s pain is taken far more seriously whereas women’s is dismissed as “psychosomatic”, a sign of depression and anxiety rather than real pain.
Your birth story sounds excruciating. EDS is awful. I have a possible diagnosis of fibromyalgia, yet another illness that takes forever to be diagnosed.
Sending hugs ❤️
I have Fibromyalgia (aka 100 problems we're throwing under an umbrella), PCOS and an "unknown" autoimmune disorder that we've spent years trying to figure out what it is. They're finally testing me for EDS. I've been fighting for disability for the last 2 years and they keep focusing on my age not my illnesses and how much it has impacted/ruined my life. I wish they would follow me around for a week too! We're just numbers to them not people they don't care at all 😮💨.
I know. It’s upsetting and frustrating. I hope you get what you need ❤️ I have mental health issues, an eating disorder, long covid/fibromyalgia and osteoporosis but apparently I’m fine 🙄
Excellent article 👌 I might offer it to my GP to read for better understanding of the complexities of Chronic Pain. Thanks 🙏
This is wonderfully written. If you are always in pain, you have to learn not to howl in order to live and interact. There is little understanding.
I’m a hand surgeon, but I often treat CRPS. Pain is a difficult issue to gauge for people that don’t experience it or treat it. Many chronic pain patients are pushed aside not because physicians don’t care, but because they don’t necessarily know what to do. I think some are quick to judgement, like you alluded to in your article (defining patients as drug seeking, etc). But I think most end up eventually defaulting to sidestepping these patients due to complexity and a busy schedule. We like solving problems, but once there is something beyond our scope/capacity, the limit of what can be done from our standpoint is reached. Add a heavy workload with multiple patients and only 15-20min to see each, it doesn’t create a lot of time to problem solve. The system often limits what we can do, and when you combine this with the cognitive load of patient complexity, chronic pain or both, many will throw their hands up in surrender.
So incredibly, incredibly real. I'm so thankful that I don't have to live with constant pain the way my girlfriend does, but my episodes are frequent enough that I've learned to say things like "the pain is only a 3 but my tolerance is at like a 2 right now" - which my loved ones understand, but doctors rarely do.
I actually love that phrasing regarding pain level and tolerance! That’s incredibly helpful for communicating to loved ones who get it. I wish it was more helpful for communicating to doctors but I think a lot more has to change about medicine on a systems-wide level before it would. I’m sorry you and your girlfriend both experience this, too! Sending hugs 💜