What’s the hardest part of your condition that no one understands?

[fullsand]

Sometimes, I feel like people see just a tiny part of what I’m going through. They might know I have chronic pain, but they don’t get how it never stops. They might hear I have schizophrenia, but they don’t realize how much meds mess with me—fixing one problem while causing another. The worst part? Trying to explain it and getting blank stares or bad advice.

I know I’m not the only one feeling this. What’s the one thing about your condition that you wish people truly understood?

[BertoBishop]

I’m a big guy and look “strong”. People can’t see my back pain. The assumption that I can just do stuff because of the way I look without realising the constant pain I’m in. Also the assumption that “everyone” has back pain.

Chronic pain is hard to convey to people I think, if you’ve never experienced it

[fullsand in reply to BertoBishop]

I completely get what you mean. It’s so frustrating when people assume pain is only valid if it’s visible. Just because someone looks strong or 'fine' doesn’t mean they aren’t struggling every second. And that 'everyone has back pain' line? It completely dismisses the reality of chronic pain—like comparing a paper cut to a deep wound.

It really makes me wonder… How do you even begin to explain chronic pain to someone who has never felt it? Have you ever found a way that actually made someone understand?

[BertoBishop in reply to fullsand]

No, I’ve tried and people nod but I guess it’s too difficult to understand unless you’re experiencing it. Like I don’t know what it’s like to be blind, but I can imagine it’s pretty challenging and not ideal. I suppose it comes down to accepting that people can’t know what it’s like to be you, and to be ok with stating your limits?

[Defenders]

Hello, I’m Isobel from the UK and I live with chronic pain, the catalyst of which you can’t see! I have pain through my body which never stops. The only relief I get is when I’m asleep because my meds knock me out. I’m on Gabapentin and I have Dosulepin at night. I’ve lost friends and some family because they don’t understand. My pain is caused by a severe adverse reaction to the antibiotic Ciprofloxacin, which is one of a family of drugs called Fluoroquinolones. There is no cure and no treatment for the multitude of adverse reactions. Doctors don’t want to know, even though they know, and offer no help! Sounds like we are both in a quagmire. Best wishes, Isobel

[fullsand in reply to Defenders]

"Chronic pain and zero support? Yep, I know that one. Ever had a doctor actually listen, or is that just a myth?"

[Defenders in reply to fullsand]

Because it was a medication they prescribed that injured me badly, doctors know, but they don’t want to know! They don’t do anything for me, I have to do it all myself. There’s no treatment and no cure for what’s happened to me. It was toxic poison they gave me in tablet form. I wish you all the best on this journey we are both on. Isobel

[Southerngirl2787]

I realize men get ignored too, but women are especially treated poorly by doctors, as if it's all in our heads! I worked in healthcare 30+ years, saw it, then lived it. My own long-term PCP ignored my complaints, told me it was stress, worked too much, rest more. It was a parathyroid tumor! Destroyed my spine, 10 fractures later, 4 spinal fusions, 2 tibia nerve transfer surgeries, both hands nerve surgery, extensive nerve damage..and 6 more discs falling apart. I am lucky to have an excellent compassionate neurosurgeon and pain mgt doctor now...but it is very costly after this much damage. I have lost most friends, as cancelling plans aggravates folks, but some days are not predictable, and explaining the pain, along with Lupus and AS...even my closest friends are caring, but don't understand how 24/7 pain rules your life. I would say that close family knows the pain...but I prefer to hide it for the most part, be as normal as possible...but when I know plans for an outing will not work for me, I speak up...one daughter has been forced to deal with the simple aspect of a 30 min drive in the mountains can wipe me out! I explain it as best I can, I have no padding in my spine, each bump, curve feels like someone is inserting a knife in my spine and it vibrates up and down. They still don't get it, but maybe some understanding is forming.

[fullsand in reply to Southerngirl2787]

Wow, that sounds unbelievably tough. It’s crazy how long it can take to get doctors to actually listen—and by the time they do, so much damage is already done. I can’t even imagine how frustrating it must have been to be dismissed for so long, only to later find out it was something as serious as a parathyroid tumor.

I completely get what you mean about friends not understanding. Chronic pain isn’t just “pain”; it dictates every little thing—what we can do, how long we can do it, even how much we have to mentally prepare for something as small as a car ride. And the worst part? Having to explain it over and over, and still not being truly understood.

I respect that you try to keep things as normal as possible, but it’s good that you speak up when you need to. If people can’t handle the reality of chronic pain, that’s on them, not you. I really hope your current doctors can help manage things better for you. No one should have to suffer like this.

[Southerngirl2787 in reply to fullsand]

My pain mgt team is great...never have had a bad experience with them. They also explained that pain meds get a bad rep in the media, and they tend to blame folks for taking them...but when you need them, your body needs them to function. They encouraged me to take them on a schedule, not randomly, it made a huge difference. I think the media, "experts" have shamed folks on pain meds, sure made it difficult to get services when needed, very costly, time consuming....truly makes life difficult at times. I've accepted that this is my life going forward...so I'm making the best of it.

[Defenders in reply to Southerngirl2787]

I hope so. We certainly deserve it. BW Isobel xx

[Alicepinheiro]

I deal with pain 24/7. I always try to look ok so my family and friends can "understand". But that doesn't mean I'm not in pain. Cause this pain is always here. Always.