8 MISCONCEPTIONS ABOUT CHRONIC PAIN AND ILLNESS [CC]

There are so many myths and misconceptions about chronic pain - here are eight that I've faced, and how I've handled them.

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Fourteen years of pain and failed ankle surgeries brought me to 2018, when I made the difficult decision to become a twenty-seven-year-old below-the-knee elective amputee. This channel is to document my journey of amputation surgery, recovery, and reclaiming my life.

[sleepingroses]

04:45 in the video, "It takes so much energy to try to be a normal person." Yes, absolutely! As an invisibly disabled person, I echo this thought in my own mind almost every day. Thank you Jo for sharing your thoughts and experiences!

[carasachs]

Great video. I’ve had severe chronic pain my entire life, 24/7/365 for 50 years. Here’s the thing about the advice-giving:

1. It’s deeply invalidating. It sends the message of “you just haven’t tried hard enough”.

2. Yes, it does usually come from a place of wanting to help. At its core though, it usually comes out of fear. There’s the uncomfortable thought that “if you could suddenly become sick, that means I could too”. People don’t know what to do with that, especially since disability and illness tend towards being taboo topics. It’s scary to contemplate that lack of control over one’s own existence. We have an innate drive to feel some control over our own future. It becomes less scary if they think that we became sick (and stay that way) because we just aren’t trying hard enough. It feel more reassuring and less scary to think “if I got sick I would try harder to get better than you are”. This is human nature. It doesn’t make it easier, but it helps me to understand that this advice giving behavior often grows out of an existential fear.

[Hawk]

Yay Sadie!!
You had me near tears talking about being near suicidal. I've said to friends who've asked, I'm not suicidal but I can see it from here. It's really great to know I'm not alone. Thanks!
Call the painting Petunia.

[LazyGirlOtaku]

This video is so amazing. I have EDS, chronic migraines, and Fibromyalgia that make me have chronic pain. Whenever someone asks me what it is like to live with chronic pain I am going to send them this video! It is wonderfully light hearted but still informational/ helpful.

Something that I find with people around me is that my pain isn’t taken seriously because it can be so varied. One day I can run up and down the stairs and do Tae Kwon Do —the next day I might need a cane to walk around the city. I don’t know a useful method for getting them to understand other than “it just depends on the day.” But I think sharing this video with some people will give them a better idea of what it is like to live in chronic pain.

[Jlynne]

I have EDS (ehlers danlos syndrome) and suffer from chronic pain virtually every second of every day. The two misconceptions I think I feel are:
1) If you take narcotics for your pain, you’re automatically stigmatized and you’re quite possibly addicted. I can honestly say there is little to nothing I enjoy about pain medications...they make me sick, they give me hives, they make me very cranky and they take away my ability to sleep well when they have to be taken. But what most people don’t understand is people that are truly in this much pain, you have no option most of the time. For me, my back muscles particularly literally rip in half from something as small as plugging in my phone charger. If I just sat and took that pain all day every day, that would be a life so not worth living IMO. You shouldn’t want that existence for someone just because the medication can if abused become a problem. Believe me, if we are at a point that that is what we have to do, chances are we’ve tried everything else available first.
And 2) When we disappear or are flaky, or cancel plans...know that that isn’t because we are just flaky, it’s because we have pushed through so much already in that day that we know we wouldn’t be a person that you would want to be around. We are probably cranky, maybe emotional or desperate, and almost always greatly suffering. If you have a family or friend that deals with chronic pain, if they ever cancel a plan to go do something, maybe ask them if they would like for you to grab dinner and come over and even just hang out beside them in bed. I bet you’d get an acceptance. Just because they’re in pain, doesn’t mean they like to be alone or don’t want to be social...it’s just our assumption that you would not like hanging out with that run down version of ourselves.

[ARenee-byev]

A misconception about chronic pain:
I have been told that I am too young to have chronic pain but I think that, like most conditions, you can have it at any any age even if it is uncommon. At 16 I should not have to prove my pain to a doctor or school teacher to try to get help. I go to school everyday knowing that I will have to take notes, do assignments, walk down the hall and up and down stairs as well as be a pleasant happy looking person knowing that by the time I get home I will have just enough time to drink a glass of water before I must take a nap because I am so tired and have had to refrain from sleeping through an AP class. I wake up do homework maybe eat something and go back to sleep to do it all again the next day. I think people should open their minds to the fact that anyone can have chronic pain and if they are affected by it to any extent that it most likely affects many aspects of their lives.

[sarahtallbull]

Chronic pain is absolutely awful. I work in the medical field and it puts the patient and the caregivers in horrible situations due to the opioid epidemic. It’s very difficult to help people with chronic pain. I really hope yours stays manageable!

About the cow- she looks like a Maureen to me. I dont know why. She also looks like a daisy, but that’s a bit cliche.

[vadskamanta]

I know this is a 2 year old video, but I'm just watching all of your videos from start and since I'm dealing with chronic pain, and has been for the past 15+ years this is one topic that hits close to home.
I totally agree with you on all parts, it was just me nodding all through the video.
One thing I'd like to add to the part about people "trying to help" is that not all chronic pain is the same. Even if your chronic pain stems from the same part of your body as someone else doesn't mean that your pain is anything alike, or most importantly of all, that the reliefs/solutions for that pain is the same.
Also the feeling of you having to either validate your pain by going through all you medical history for someone to believe you, or having to go through it to make people understand that this is something more than just something passing.
Oh, and this might not be relevant for everyone with chronic pain per se more from a disability stand point, but constantly have to ward off people from wanting to call the ambulance/taking you to the hospital. If something happens, that is "normal" when it comes to your body but that seems very frightening to others who don't know you, and people just immediately wants you to seek a doctor. I love the compassion and the empathy that people have at times, but it sadly does get very annoying - especially having to deal with other peoples emotions and reactions when all you should do is focus on yourself and your body.
Ok, so this became a mini-rant - I'm sorry, but as I said, this is something I'm very passionate about.
For anyone reading this - I hope you have a great morning/day/evening/night - whatever time it is for you, and that you keep on being the amazing person you are!

[kboz]

I have chronic pain and finally just diagnosed with a L4-L5 disc herniation, in addition to constant migraines. It starts in my lumbar spine and goes all the way down to my foot constantly. None of my friends have chronic pain, so it's so nice finding chronic pain communities online! I'm currently in a doctorate program for occupational therapy and want to work in a setting that I can help others in chronic pain! I'm so glad I found your videos!

[nat-]

Thank you!! I have chronic pain and migraines (also have a chairi malformation), I have dealt with it for a number of years and I'm good at pretending, my doctor had no idea how much I was suffering until I just mentally broke down and my friends don't really get it because I 'seem fine' or they just put it down to me being cranky (yeah I'm mad coz it hurts and I'm over it). I have had very few people actually take me seriously because apparently I'm too young to have chronic pain (I'm 23) which is maddening... sorry I'm rageing just a bit. But basically everything you've just said I have experienced and it is so hard to be positive and fake happy when everything still hurts after you've tried everything you can think of and everything a number of doctors (and physio, osteos, massage therapists, psychologists and exercise physiologists) can think of, it's probably to put it simply the biggest downer there is and the sense of hopelessness, it's not pleasant in the least and while it sucks to know there are others out there that feel the same it's also a bit comforting thank you 🤗

[shellcshells]

I love Katie's take on chronic pain but I disagree with the myth that says chronic pain can kill you... it's actually true... when a human body has non stop pain the blood pressure sky rockets. Over time this damages veins, structures, and the heart. Sudden death syndrome is a real risk for long term untreated pain.

[LymeDiseaseRadio]

We have a saying in the Neuro Lyme don't "get it" until you get it." Worse still, we are still fighting the ancient dogma of...."Well, I heard that Lyme can be 'cured' with just a few weeks of antibiotics." Arghhhh....yea, for 75% of the people. For those of us who have this weird genetic marker, not only are we more difficult to treat, our pain levels are off the wall. We're told, "no one can possibly be in THAT much you a pill seeker? It's either that or it's all in your head." Thank you for sharing.

[TracyLeaBeauty]

Hi Jo! I’ve suffered with chronic pain for over 13 years and am on narcotics for it this whole time! My pain was caused by a surgery I had. I woke up and knew there was something wrong with my back! I haven’t had a pain free day in over 13 years, I know what you’re feeling! My pain will never get better, there’s nothing they can do! I’ve been on every narcotic there is! It sucks! People who don’t have chronic pain just have no idea what it’s like and how it feels! It feels hopeless! I have back pain and knee pain. Pain is just draining, isn’t it? You can never escape the pain! It’s my constant companion! I’ve never looked on YouTube for the chronic pain community, you are the first one I’ve watched! Thanks for this video!🌺🌺🌺

[susuoftexas]

Because you look ok most of the time (because you usually have to fake it) people think you can't possibly be in pain. Even when I have pain I have to work, I have to get on with life and I can't let it rule my life or I'll be in bed 24/7. Then because "they", whoever they are see you as ok then they find out you are doing pain management then you get the whispers behind your back, "oh she looks fine why does she need pain meds" or "you take pain meds? You need to be careful not to get addicted ". If I've heard that 10 times I've heard it a thousand, JUST BECAUSE I HAVE CHRONIC PAIN FROM RA AND I TAKE PAIN MEDICATION DOES NOT MEAN I AM A DRUG This makes me so angry, people always offer alternatives to meds and I always say do you think I have not researched or tried other things besides taking

[carabauer]

I adore this video. I am diagnosed with over 10 chronic conditions, and I'm not on any medications because I've tried virtually every surgery, procedure, and medication suggested by doctors and nothing has given me relief. That being said, I'm still going to school full time to get my degree. Its more difficult than I could ever describe some days, but I know life doesn't end just because I'm in immense pain! Everything you said was so well put, you've gained another subscriber girly! Keep being you.

[tryphazzard]

This makes me want to cry. You hit all the notes that I've been dealing with for the last 2 years. I have to act normal for my family and it's a constant battle to tell them I'm not okay. I have chronic migraines and so I look perfectly normal until I start covering my ears or eyes to stop excess stimulation.
Thank you for putting this in the open!

[gastrogal]

Hey there Jo, You are truly an inspiration to all who suffer. You tell is like it is and that honesty is what will continue to give you and those around you in person or even on the internet. I know there used to be a great web-site for anything chronic, something like “But you don’t look sick?” It was of great help to me during my first years of recovery after an auto accident. I shattered my right heel and broke some bones, so the patched me back together with a metal rod and four screws. After I have heard your story I feel so very lucky. I too have had many horseback riding accidents, and cannot help but wonder if they are now contributing to my own chronic pain. I finally learned to stop asking “Why me”, and instead be glad that I had a wonderful grandmother who taught me early in life to overcome just about anything with time, trust in myself, love for myself as well as giving others time to understand (for those who could), to trust in those whom have proven to be trustworthy and finally love them with no judgements even when they simply could not understand. So I just want you to know I found you because I am meeting with an ortho surgeon tomorrow to get a consultation as to whether it is finally time to fuse my foot. My auto accident was in 2004, and in 2006 they did another same surgery to clean out the adhesions. My surgeon at that time was great. He told me I could already use a fusion, but since I was only 45, he asked me to “wait as long as possible since medicine was making great advances, and the surgery would need to be redone and it may not even take away my chronic pain. He was so great at showing me my MRI and letting me know that it showed that I had an ankle bone the age of a 90 year old woman, but whoever did my first surgery did a stellar job, and that I had so much arthritis - and this was my big take away from the entire MRI explanation - he said your arthritis is extensive and it can be sneaky, so listen to your foot as you go through your days. He said a simple wobble on a pebble stone could lead to excruciating pain - that would not show up for up to 4-5 hours. This I think is good info to share with anyone who breaks an ankle. I only say this because when he first spoke of the arthritis I said, but that should be no big deal, right? He said absolutely not Arthritis can be am able to manage okay as long as I don’t do much of anything. Some days just walking while shopping for gr

[lightpinkmommy]

I paused the video to say... And not that you will even ever see this but I'm I a very dark bad place with my mental health and it seems to be making my chronic pain 1000% times worse so I'm power watching your videos however I just took my anxiety meds and pain meds so I may fall asleep...
I just wanted to say.. Thank you so much for being you! I believe the world and YouTube are a far better place with you in it..

[fancycactus]

I have been having pain for 2 years. Chronic and making me unable to live a life properly. I wanted to die for about 6 months but you have given me humbleness and thankfulness. You are so strong, bright and loving. Hope the best for you. thank you for sharing

[sierrabailly]

Hi there! Me again! I have chronic back pain so I hear you on all of this! When I was 15 a doctor told me I need surgery on my spine and I was scared so I didn't do it then, but now, it's so bad that I lay in bed all day sometimes. I don't have money or insurance or support from neither of my parents, so it's something I just kinda live with and it makes me so grumpy sometimes. So I loved this video because it's so so so on the dot! Just wanted to share with you 💕 have a great day