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No, it isn't normal, but unfortunately my partner also gets the exact same replies to her pain from her parents, and has since she was very young. It's taken many years of reassurance outside of their home that her pain is not normal and that it is perfectly okay for her to rest whenever her body needs it. Some folks just don't seem to understand that while experiencing some amount of daily pain is common when you get older, it's not comparable to someone going through it 30+ years younger.
Thanks for the reply, I thought so. He’s gotten upset when me or my sibling (23) brings up that maybe it’s because he’s older and tells us he had knee problems when he was in highschool too.. frustrating.
He's just wrong
It can be hard for adults to admit that their life has been bad in some ways
It's likely he was told to "toughen up" or "stop complaining." It's likely the voices in his head are extremely self-critical and unkind.
People who have not received compassion can't express self-compassion, and they certainly don't have any compassion for others with their same struggles
If what you're experiencing isn't normal, then it would mean his whole life needs to be re-examined
It's far, far easier to downplay a teenager's complaints and say that you're being dramatic
You see this with medical neglect and with a wide variety of abusive situations. "My parents did XYZ and I turned out fine, so you need to stop complaining..." But, uh, did the adult turn out fine? Did they really?
Sounds like ignoring his own medical issues didn't turn out fine
Lower your standards and never expect him to acknowledge your legitimate medical needs. It would upend his personal history. He will never validate you unless he goes through a lot of self reflection
u/tealperspective Wow. You have made some truly brilliant connections here. You're really making me think about why my husband has such a hard time not only admitting when he's in pain, but also being compassionate towards me and our two kids when we're having bad pain days (all 3 of us have EDS). He believes on a rational level that we have a valid reason for the pain, but emotionally, he struggles with thinking we're just lazy. He was raised with that tough love philosophy and heard lots of comments about laziness and apathy, and being useless, careless, inconsiderate and weak. It's so sad. I think he has lots of internal battles around this, with one part of him wanting to be understanding and supportive but the other part from childhood telling him that we must be lazy, weak and rude.
So, u/asonr, you are not lazy. You are not weak. You do not complain too much. There is a known reason for your pain. Chronic pain is not normal and is not something you should just try to ignore. While some pain can be psychosomatic, your pain is very likely not. Your body is trying to tell you that something is wrong. You need help, love and understanding, not criticism or disbelief. You likely need EDS-friendly PT, braces or splints, maybe pain meds. This EDS mama is kindly telling you that your pain is real, your worries are valid and it deserves to be addressed. If I can help you in any way, please message me. Big hugs to you.
This right here!! 👏👏👏 it’s been hard for both of my parents but thankfully my recent diagnoses (narcolepsy, POTS, and likely hEDS) are getting them to pay more attention to themselves. It’s like, it would have been nice if they had paid attention when I was young about my issues I was very vocal about, but now that I finally advocated for myself and got validation from doctors, they’re both wondering about themselves bc I swear they BOTH have narcolepsy. But I don’t hold it against them, because they were a product of THEIR parents’ upbringing. Sometimes the kid raises the parents lol. It’s nice when generational problems can be worked through. I feel for OP because I used to be in the same boat.
When I was 9, my mom told me, "Everybody hurts all the time. They just don't talk about it. Nobody needs to hear all about your every ache and pain..." she was diagnosed shortly after I was. Until then, she honestly believed that pain of some degree was a normal state.
Her dad (diagnosed posthumously) was worse! "Grandpa, what happened there?" (Gesturing to a gaping wound), "Oh, I don't know- something..."
"What happened, Grandpa?"
"What?" (Sees everyone looking at his massive bruises) "Hm. Guess I must've bumped into something..."
I walked in on my Grandpa coughing up a LOT of blood once. He said, "The doctor doesn't know why, so it must not be anything."
My adult child has recently been diagnosed with eds but during the process we have had this conversation. They would always say "maybe it's in my head. Maybe there's nothing wrong". I would remind them, most people's daily pain is at a zero. What is your daily pain? 5? 6? Not normal. You are not making this up.
When I tore my meniscus and could barely walk... I told them my pain was at an eight. When they asked me when I went to my doctor what my normal pain level is I said a two or three. When they got my MRI results.... The number one question was "how the hell are you even able to walk?" Because my knee look like shredded cheese. I have no cartilage. I sublux my two knees around a hundred times a day.
My doctors just decided A pain scale isn't going to do it for me. Because if me walking on those limbs was a two or three... My pain scale isn't worth discussing because it's astronomical
Instead, they asked me how it is affecting my life. How much work am I able to do how much housework am I able to do how much does it affect my social activities. And I think it's a much better meter than an arbitrary pain scale for which every person has a different level of pain.
It also reminds me of when I used to have my periods and I worked at a women's clinic and it was a really slow day and I was crying from the cramping because there was no one around so I didn't have to put on a brave face. And they hooked me up to the monitor that tells you how much pain a person giving birth is in. My contractions made it look like I was 8 cm dilated that's how strong the contractions were. I think I told them my pain was a five or six that day.
A "normal" person does not experience pain daily. The average person doesn't have to footnote their pain tolerance.
It’s funny bc a person who is always in pain is generally perceived as having a low pain tolerance, when in actuality, I’d say we have a pretty high tolerance, considering we live our lives tolerating pain all the time.
I get that feeling too, like it’s not really an issue, that my pain is normal and I should just suck it up. What then reminds me that it’s real is when I physically can’t stand up because my knee won’t support my weight, or when I stretch my arm and my shoulder jumps out of its socket for a second
Most people's daily pain is zero. I had honestly forgotten about that. I tend to undermine my own pain, I need to remind myself ot that every now and then.
My dad also has the same attitude. He's in his 70s and undermines my pain by listing his pains. I'm 41, but been like this since I was a teenager. Also I recently discovered a brain aneurysm and he immediately said he had an aneurysm in his stomach. Like mine is no big deal. Sigh.
This was it for me. I started to doubt myself a lot, but I couldn't ignore the pain a lot of the time. The more I was told that nothing was wrong, the more I felt like I couldn't trust my own perceptions.
lol that sounds like my family. My issues with hypermobility/subluxations are the worst out of everyone else, but joint pain is something that’s common in the family. I grew up w/ joint pain + migraines, but was told it was normal or that they were “growing pains”. I’m 20 and 5’1”. Definitely not growing pains anymore lol.
I’d say it’s definitely possible your family has it. I’m like 90% sure that most of my family has some variation of it, but maybe not all of them fit all of the diagnostic criteria. My mom’s stretchy and has pain but not near as bad as mine for example.
But yeah, daily pain isn’t normal. Didn’t learn that until my doctor asked how much pain I was in everyday. Apparently “the normal amount” wasn’t the right answer lmfao. I’d definitely insist on getting him to a doctor to get some education on the condition.
Ah yes... growing pains.
When I was 12 I went to a physiotherapist and showed her how my wrists would grind and snap when I moved them, and I was in pain all the time now. My ankles were shaky, and pretty much all of my joints moved unusually and too far out of range.
She said it was growing pains, and gave me a printout of exercises to do. There were about 400 repetitions on it to do everyday. I could manage about 20 and then I end up in bed for the rest of the day. When we went back to her she said that if I couldn't do the exercises, she couldn't help me. We knew I had problems with hypermobility at that point, but she dismissed that too.
I should probably go back to physiotherapy now I'm older and have so many new issues, but I still remember that experience, and it puts me off. People don't realise the huge impact dismissing pain can have.
I was told 'growing pains' too... *I'm so glad we've all found each other here.*
Always in my joints, a dull ache, worst in my ankles, knees and hips for as long as I can remember. Not all the time, usually early morning and late night strangely.
Me too!! Growing pains. Or some docs would say it was magnesium deficiency so I should take epsom salt baths.
And then, when my kids were little, I told them the same thing about their leg pain. It's all I knew (this was long before I knew we all had EDS). It's what I was told about those same pains, so that's what I told my kids.
I feel so incredibly guilty now. If they had continued to complain about it hurting, I would definitely have taken them to their pediatrician (who probably would have said "growing pains," but that's beside the point). But, they didn't say anything about it again, so I figured it had stopped. No, actually, they had just internalized that they shouldn't complain about pain. I didn't hear anything else about pain until my youngest was 16 and it was so bad that he couldn't ignore it anymore. My God, I feel so incredibly awful that my kids suffered in silence. Please please listen to your kids!
You realizing and admitting fault, and finding the root of why you acted that way, is definitely something most never do. You’re already way ahead of most on that front. If you don’t have the vocabulary to discuss what is wrong then it never happens, and now we know words like “hypermobile”. If my parents did half of what you just described, I would feel less terrified at the prospect of inevitably needing to rely on them. I can’t work and live with other family.
The normal amount of pain is the same as the normal amount of suicidal thoughts. Both are zero. “Normal” people only in pain because they are sick or injured. That’s what pain is for, to tell you that something is wrong. Sometimes people develop pain as they age because their bodies are old and injured and worn out. But you should be in pain at 16 unless you are sick, injured or menstruating. It is our normal but it is not normal. If he has chronic pain and thinks it’s normal to just be in pain by moving and walking then he has something wrong with him because it’s not. It’s just his normal and he doesn’t understand that most people doesn’t experience this.
It’s the same with training, if you work out hard you will be in pain, no pain no gain as they say, but it will be a dull muscle ache and if your joints hurt something is wrong and you need to stop before you do permanent damage. If it’s anything other than work out muscle pain something ain’t right. I was convinced by physiotherapists that I was supposed to be in pain and it would get better and I would become more stable and stop hurting if I just kept at it. I did not. It never happened it just got worse until I quit. Because neither they or I knew that I was severely hyper mobile and as a result I have done permanent damage but training wrong. Fuck I have even been walking and standing wrong. I got myself a great physiotherapist that understood hyper mobility and that retrained me on everything. Changing how I hold my body and how I walk and stand and everything. Helped a lot.
I thought constant pain was normal too until I was diagnosed. EDS is genetic, so it’s possible that he has it too and passed it down to you, but is so used to that that he thinks it’s normal. Joint dislocations (in the abscence of trauma) are not normal, and neither is constant “normal” pain.
No, it’s not. Even doctors perceive our symptoms as normal because people have back pain here and there, but chronic pain at 16 years old is not normal.
I had that too. It took me until age 33 to be taken seriously.
You know what you know. 💛💛💛💛💛💛💛
I think the most realistic answer that I can give is "it shouldn't be, but sometimes it is".
Meaning that no, people should not be in pain regularly. Not unless they're a boxer or something who's actively doing things that cause hurt. Obviously if you make a habit of punching a wall every day hand pain is going to be a normal part of your life... and maybe also frequent wall repairs. But just day to day life stuff shouldn't hurt. Not on a regular basis. All people will experience some pain sometimes. That's unavoidable. But it's not a normal or average or routine part of life. Or at least it shouldn't be. Walking normal amounts shouldn't hurt. Sitting at a desk or in a car shouldn't hurt. Writing a letter shouldn't hurt. Existing shouldn't hurt.
But for a lot of people there is some part of life that does hurt and they just kinda accept it. That does include a lot of able bodied people who just have this one quirk like bad posture or repetitive strain injury. It doesn't always have any particular impact on people's lives beyond just kinda hurting.
It also unfortunately includes people who are in some way disabled or have an "actual problem" that does impact their wider life, but who don't realise it. It's unfortunately pretty normal for people to dismiss pain when it shouldn't be normal to be in pain. Honestly I feel like for some people it even gets to the point where they can't really accept it because it would mean shifting their whole world view. Like they could be supportive and accepting of another person in the exact same situation as them, but applying that to their own situation would go against years and years of how they've perceived reality and viewed themselves. So they kinda keep existing in this state of unknowing stubborn hipocracay. People are weird.
But anyway, if you feel like something isn't right then something isn't right. You should be comfortable in your body. That doesn't necessarily mean any one particular thing. But just you feeling like something is up is reason enough to look into it. Even if everybody is always in pain and that's normal and they just get on with it then you not being able to just get on with it would be a thing. One way or another there's something happening.
If your dad also has similar issues with some things he may well be one of those many people who's accepted pain for one reason or another. I think we're only just starting to get out of that deep "deal with it. Suck it up and keep going. Perseverance is strength, self care is weak" type of mentality. Hopefully he'll eventually learn that he doesn't have to just deal. And hopefully he'll be able to get some relief. Whether or not that does happen for him you don't need to let his experience with life make you doubt your own. You don't have to accept suffering just because other people do.
it’s not normal. my mom was the same growing up (though she has learned a lot through my sister and I who are now both diagnosed), and she thought it was normal, because it was her normal. she likely has it as well.
The normal amount of pain is no pain. Unfortunately some people (who also are in pain) don't really get this and lean into a suck it up mentality, probably because they were dismissed so long too.
I (42f) was always hurting my ankles and wrists when I was growing up. It was always ignored and I was told to ‘walk it off’ and would get in trouble if I limped. I had a “low pain tolerance” for many years even though I worked a manual labor job for a couple of days with a broken bone, before going to the hospital to get it checked. Even when people -including doctors- knew some of the pain that I’ve had, still said that I have a low pain tolerance, that pain was normal and that it was all in my head.
It took me 4 years before finding someone who believed me and told me that it was not normal.
I think though that for your dad, it IS normal because that is all he knows.
People thinking you have a low tolerance for pain is so real. If anything, I think my tolerance is high due to sitting through migraines for hours on end. And many 12+ hr shifts on my feet. But despite all that, family members/friends will write you off as whiny and over dramatic— it always irritated the hell out of me 😭
I got the same thing from my mum. It's taken me until very recently to convince her that she's where I got my EDS from, because for years and years, every time I brought up a problem I was having, her response would be to tell me that it was just a part of life. Aching joints? The cold will do that to you. Twisted ankles? Gotta be careful on that uneven ground! Constant exhaustion? Welcome to adulthood.
It didn't help that my dad is an amputee, and due to being from a working class Presbyterian family he was not permitted for even one minute to give up and "become disabled". So, y'know. If the guy who's been walking on a twisted femur with a dozen blisters in an ancient fiberglass prosthesis for the past 50 years can get by without a parking placard, what's your excuse? 🙄
It truly shifted my entire worldview the day someone told me that the normal amount of pain is zero. Genuinely zero. In your whole body. All the time. Like, for most people being in pain is a notable event. Because their baseline is none.
My father is the same way. ‘Pain is normal, you just have to learn how to ignore it.’ I tried to explain the spoon theory to him one time and he said ‘That applies to everyone.’ It is so frustrating.
"The normal amount of pain is zero." I don't know who said it, but it blew my mind, I can't imagine having zero pain, but apparently it's the normal amount.
The thing that blew my mind about the pain scale is that the vast majority of people go through life at "0", no pain at all. Pain is one of the ways our bodies signal that something is wrong. Saying that being in pain daily is normal is like saying having a fever everyday is normal. It's just not true and not how human bodies work.
> "Life is pain, highness. Anyone who says differently is selling something." *The Princess Bride*
I grew up around adults who all had chronic pain from various issues. When I complained about pain, they told me that it was just how life is.
Consequently, I never took my pain seriously, meaning I didn't find out til I was in my 30s how to manage it.
I am glad in one way, because if I was told this wasn't normal, I probably wouldn't have learned to keep going despite the pain - learning what is acute and and needs treatment vs what is fatigue vs what is chronic inflammation has been a long process, with little help from medical professionals. If I'd been taught "pain is bad, do not push through", I'd have been disabled by it. However, I have had to unlearn some terrible messages so I definitely don't promote it as a philosophy.
Chronic pain is more common than people without it think, but not as "normal" as people with it believe. In regular people with no compounding health condition (like EDS, Arthritis, spondylitis, etc) often treatable with lifestyle interventions (e.g. physio, accommodations, exercise) rather than medication. But that standard can't be used when talking about chronically ill bodies, because ours are by definition not the normal physiological form.
i have hEDS but i rarely have daily pain or any issues living my life. my GI symptoms have been the most prominent thing since i was a kid. maybe he’s more like that.
He does have GI issues, and we both have for forever. That’s a really good point! I sometimes forget how many other things come with hEDS. Thank you :)
If you’ve undergone chronic trauma and see someone who has no choice but to do the same, a common (albeit suboptimal) piece of advice is to just push through, since that’s what he learned he had to do. Like, my constant neck and hip pain is now “just my body saying hello,” when in reality it sucks… but if someone were to complain to me about similar annoyances, I’d probably tell them to minimize it too, in the genuine hope that it helped. Some hard truths are learned through experience and not through advice, and “this pain ain’t going nowhere so get used to it” is probably something you’d have to learn on your own before you saw the value in the advice.
Let’s be realistic, regular pain in a healthy, active, well fed, not over stressed person is not generally a thing. Most of us don’t fit this category, and those of us with chronic pain conditions will generally have some kind of pain on at least semi regular basis.
That’s not to say you should just expect pain and not do anything about it. It’s not to say that your pain doesn’t deserve consideration and possibly treatment. But it is to say that if we have chronic pain conditions, we need to set reasonable daily pain expectations, and that might not be “no pain”.
We do ourselves no favor when we say “but normal people don’t have daily pain so we shouldn’t have daily pain“ and then set that as an expectation rather than a stretch goal. Our non-zero pain levels will absolutely impact what we can do, how well we can do some things, how much assistance we might need in some areas, our medical care, and more. But it’s just the thing we have to learn how to work with. Like not having perfect vision, we have to plan for glasses or contacts or not being able to see well sitting in the front row.
Trying to find any “should” that is appropriate to apply to all human beings is generally an exercise in futility.
I do agree that I can’t expect to have a 0 on a pain scale. I guess this is often in context of being on a walk and needing to slow down or start heading back and for him to say that whatever pain I’m in, he’s also in pain, so to keep going. Sorry, I’m not great at wording.
If this is the context then the answer is he is wrong. Overextending yourself puts you at risk for more injury. Folks with EDS often have a longer recovery period as well. While some discomfort is normal if you feel pain then something isn't right, especially if you weren't feeling that way prior to the walk.
It took me a long time to realize this and it actually made a huge difference in my progress with pilates and PT. If I'm in pain I'm either doing the exercise wrong or I have restrictions from other muscles being knotted up that needs to be addressed before moving on.
Life isn't cookie cutter and he shouldn't expect you to fit into his cookie cutter version of it.
That's valid. And a distinction he may need to hear. "Dad, I'm not trying to avoid all pain. I know I have to live in pain, I get it. But this speed is too much pain and not appropriate."
(I'm an avid hiker, and while I've turned around on hikes for lots of reasons, I've never turned around due to pain. But last week, I got 2.5mi into a hike and my hip (which is a main area of issue) was hurting more and more. I have my own internal grading system for when I change behavior based on pain - this went from a one or two to a seven and when it did, that was my sign that I had to cut my planned six hour hike short by a lot and turn around. It would have been wildly irresponsible for me to continue on my hike at that point. I love hiking so much that I will hike with a six on the pain scale for this hip in the context of known pain, if it's steady, but that's a carefully considered choice, and not even then in all circumstances. Knowing when you need to stop or change something is VITAL to staying safe.)
It is not normal. I got treated like this a lot through my life. I would voice my concern about so and so health issue, my parents would brush me off and say I was either lying, exaggerating, or make up and excuse as to why it was normal. It is not normal for anyone, especially anyone under the age of 45 to be in pain even half of the time. I have asked so many people if they’re in pain all the time, and 90% of people I’ve asked tell me no. It’s not normal.
I’m also 16 and I get told this a lot, along with being told “it’s just growing pains.” I shouldn’t be spraining my ankle from walking from my room to the bathroom, thanks.
It’s shitty that your dad is doing this to you, because it is 100% not normal. He’s 50, his body has gone through a lot more things and has aged so obviously he might go through the same things as you, but the difference there is that there’s a 34 year age gap, and you’re too young to feel this sort of pain.
This is how I like to think of it: If this pain was normal, you wouldn’t have a diagnosis.
Actually... it's not normal at 50 either. Laying tiles for 30 years f.ex. will get you knees that hurt all the time every day, yes. Some sports come with a higher likelihood of early arthrosis, yes. But those are still not "normal".
Some pain after an event that warrants it is normal. The occasional headache, for those with uteri some cramping is pretty normal, belly ache from eating too much/little/wrong,... Normal doesn't mean "suck it up" either, it's perfectly fine to treat a normal pain too. (Can even be a really good idea to do so even when someone does want to suck it up, stress gets in the way of healing, pain makes for odd movement patterns that can damage other structures, and untreated normal pain can turn into abnormal chronic pain)
Even at 50, regular pain is not normal. At 50 you can have arthritis or whatever but it's not normal. Pain is a emergency signal, "beep beep something is wrong". Even at 50.
Rember seeing a nurse about my knee and she said "what about the rest of your body, any pain?" and I said "just the normal amount"... I was stunned when she said "the normal amount of pain at your age is none"
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Besides the reality your dad may have it and be gaslighting himself (was there really another option for prior generations?), his generation is also generally prone to telling everyone to “walk it off.”
It’s bizarre. !8( anybody 50 or older seems to want to force every human to have the same circumstances in life they deal with. My older bosses always responded with serious concerns of mine (letting them know I’m temporarily inundated or overwhelmed, etc) with, “everybody is busy.”
Your brain is real af. It is not normal, but lots of people see pain as a small talk thing or get mildly competitive when you bring it up. “Yeah, I know what you mean. My back hurts a ton, too.” NO! EDS is relentless torture and early aging. I wish people could comprehended that things can be bad even if their eyes don’t see it.
It’s normal when all you know is pain. My mom never believed all my symptoms were problems because she had them too, and they were all normal to her. She’s definitely got worse issues than me and aging doesn’t help make them easier. We will all experience more pain with aging.
My 93-year-old grandma never has pain and insists it's not at all normal, so I know there are people out there who don't hurt! I grew up with an undx'd EDS mom who had been in multiple bad accidents and had very chronic constant pain, so I always thought it was normal until the last few years when I realized I was hurting even more than my mom did at her age and I didn't have all the same accidents.
My mom was diagnosed at the same appointment I was. They had us both come in because they need a family history. She told me my whole life that “pain is normal. I take 16 Advil a day. It works for me” SIXTEEN ADVIL ADAY!!! That was genuinely her advice!! It isn’t normal at all. I also sat w her when she used the bathroom when I was small because her stomach was so messed up it took her hours to go. I now go weeks between bowel movements and learned my colon doesn’t work right. I’m pretty sure hers doesn’t either.
A good physical therapist would be able to teach you how to move without causing pain. Unfortunately, many of them are not good. But if you can, see if your parents can get you referred to PT and try to find someone educated in EDS.
I do have regular pain but not 100% of the time and usually not unbearable. PT has helped me in that regard. Also certain dance training and yoga training helped me, the parts about avoiding hurting yourself.
I was going to pt for a while, but things only got worse… had a great guy (now out of the practice), and then he went on a break for a month and I had an absolutely terrible pt, insisted that I had to stretch, that’s the only exercises we did, told me it must be diet, and that “everyone is hyper-mobile, that can’t cause your pain.”.. so I’m not currently in PT… might be going back when I can find somebody.
Chronic pain is *common* but not *normal.* And if you struggle with it, you deserve support and to be taken seriously.
Also, there is a difference between aching a bit or having a stiff neck and your pain significantly impacting your day to day life. I want to be clear - any pain at all is not normal, but there's another distinction here.
I knew my wrist, shoulder and ankle pain was unusual, but I sincerely thought that since "everyone" had back ache and knee pain and a stiff neck, I shouldn't mention it at all. Newsflash: not everyone has this! They are not all just choosing not to complain about it, turns out they simply don't experience chronic pain!
I was also unobservant enough not to realise that they weren't struggling to sit in a chair for an hour without getting completely overwhelmed by pain and fatigue. I was in so much pain that I found it difficult to follow simple sentences but for some strange reason, in my mind that was normal. It doesn't help that I grew up with someone else with EDS, so it really was normal in my house to be in huge amounts of pain and just get on with it. As [GaiasDotter](https://www.reddit.com/user/GaiasDotter/) said in another comment, "it is our normal but it is not normal".
And also, there's not really a normal amount of pain for people with EDS either. You shouldn't dismiss it if you're finding it hard to deal with, just because you have EDS. Doctors will try, so you've got to fight for yourself there.
Any amount of pain is not normal, but struggling with day to day tasks because of is an important distinction, and deserves to be taken seriously.
I have this problem! I'm 16 too and my mom is about 40. she says this sort of stuff to me all the time and idk what to do other than suffer in silence.
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Just because he has normalized pain does not mean you should. He may not know a life without pain, and most older generations were told to suck it up. You are a child and should not be in pain.
He's wrong. I'm sorry that you are having this experience. It took about 26 years before my mother accepted that I was always in pain. I was often beat severly as a child for complaining or made to do strenuous chores/activities to "toughen me up." That's how she was raised and how she raised us. She said pain was normal.
I cut my parents off when I was 18 and moved out. I'd rather struggle than be mistreated. Eventually my mom got parkinsons and the tables turned. Now she's always there for me and expresses how bad she feels about it. It took a lot of time and therapy to let her back in, but I'm glad I did. She's now becoming mostly disabled and lives her life in constant pain. I pity her. I pity the pain she's in being trapped in a dying body, but I mostly pity that she has to live with what she did to me all those years.
As a 51 yo male without EDS I can assure sure you pain is normal, be it back knees or whatever. As a 16 year old pain is not normal, at all. My wife has EDS. and a lot of the pain she suffers varies but it almost always ties back to EDS. It’s not imagined or normal. It’s entirely related.
Unfortunately, it is normal. But you get used to it. I don’t mention it anymore and my partner sometimes doesn’t get that I just sit with the aches. Then he calls me stubborn for not endlessly taking pain relief. Sweetheart you’re young, what your dad is feeling could be a combination of age & EDS. Regardless I’m 48 and I can no longer tell the difference between old age and EDS pain. Which sounds weird now I’ve actually typed that out. Stay active my dear x
It is and it isn't. For those of us with EDS, it is our normal! We have to get to know the kinks and quirks of our bodies and understand our own custom limitations in any given time or circumstance. Considering EDS has long been under diagnosed, like for generations, those older than us have a differently-adapted perspective and language in that absence. It's worth listening to and then adjusting with current science and education (which, remember, can be liable to change considering new studies ongoing now) amd again with your own observance of your personal physical needs/limits.
I have heard it is better to move some injuries around to keep blood flowing to the injury for healing, and I do absolutely believe that is a real thing we as EDSer's need to do possibly on a regular basis, especially since we are extra supple and prone to constant, chronic injury.
I think this was also helpful when I broke my pelvis and couldn't really understand what my body was going through at the time... I just knew in instinct, or at least I think of it this way now looking back, as an explanation on how I acted naturally to get beyond the injury (it was weeks later I finally got an X-ray to see, and indeed the doc said I had a fractured pelvis and it indeed showed scar tissue or healing tissues having already made way). I was put on crutches and a specialized exercise plan (an adjust PT profile because I was in the army at the time).
I'm 32 my hubby is 43. I ask him constantly if my pain is normal and I'm just being a big baby. His constant answer is no it's not normal he's never had the pain and stiffness I endure
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No, it isn't normal, but unfortunately my partner also gets the exact same replies to her pain from her parents, and has since she was very young. It's taken many years of reassurance outside of their home that her pain is not normal and that it is perfectly okay for her to rest whenever her body needs it. Some folks just don't seem to understand that while experiencing some amount of daily pain is common when you get older, it's not comparable to someone going through it 30+ years younger.
Thanks for the reply, I thought so. He’s gotten upset when me or my sibling (23) brings up that maybe it’s because he’s older and tells us he had knee problems when he was in highschool too.. frustrating.
Pain is your body telling you something is wrong. Ignoring that can cause more problems. There is no award for suffering.
He's just wrong It can be hard for adults to admit that their life has been bad in some ways It's likely he was told to "toughen up" or "stop complaining." It's likely the voices in his head are extremely self-critical and unkind. People who have not received compassion can't express self-compassion, and they certainly don't have any compassion for others with their same struggles If what you're experiencing isn't normal, then it would mean his whole life needs to be re-examined It's far, far easier to downplay a teenager's complaints and say that you're being dramatic You see this with medical neglect and with a wide variety of abusive situations. "My parents did XYZ and I turned out fine, so you need to stop complaining..." But, uh, did the adult turn out fine? Did they really? Sounds like ignoring his own medical issues didn't turn out fine Lower your standards and never expect him to acknowledge your legitimate medical needs. It would upend his personal history. He will never validate you unless he goes through a lot of self reflection
u/tealperspective Wow. You have made some truly brilliant connections here. You're really making me think about why my husband has such a hard time not only admitting when he's in pain, but also being compassionate towards me and our two kids when we're having bad pain days (all 3 of us have EDS). He believes on a rational level that we have a valid reason for the pain, but emotionally, he struggles with thinking we're just lazy. He was raised with that tough love philosophy and heard lots of comments about laziness and apathy, and being useless, careless, inconsiderate and weak. It's so sad. I think he has lots of internal battles around this, with one part of him wanting to be understanding and supportive but the other part from childhood telling him that we must be lazy, weak and rude. So, u/asonr, you are not lazy. You are not weak. You do not complain too much. There is a known reason for your pain. Chronic pain is not normal and is not something you should just try to ignore. While some pain can be psychosomatic, your pain is very likely not. Your body is trying to tell you that something is wrong. You need help, love and understanding, not criticism or disbelief. You likely need EDS-friendly PT, braces or splints, maybe pain meds. This EDS mama is kindly telling you that your pain is real, your worries are valid and it deserves to be addressed. If I can help you in any way, please message me. Big hugs to you.
This right here!! 👏👏👏 it’s been hard for both of my parents but thankfully my recent diagnoses (narcolepsy, POTS, and likely hEDS) are getting them to pay more attention to themselves. It’s like, it would have been nice if they had paid attention when I was young about my issues I was very vocal about, but now that I finally advocated for myself and got validation from doctors, they’re both wondering about themselves bc I swear they BOTH have narcolepsy. But I don’t hold it against them, because they were a product of THEIR parents’ upbringing. Sometimes the kid raises the parents lol. It’s nice when generational problems can be worked through. I feel for OP because I used to be in the same boat.
When I was 9, my mom told me, "Everybody hurts all the time. They just don't talk about it. Nobody needs to hear all about your every ache and pain..." she was diagnosed shortly after I was. Until then, she honestly believed that pain of some degree was a normal state.
They are really the “walk it off” generation
Her dad (diagnosed posthumously) was worse! "Grandpa, what happened there?" (Gesturing to a gaping wound), "Oh, I don't know- something..." "What happened, Grandpa?" "What?" (Sees everyone looking at his massive bruises) "Hm. Guess I must've bumped into something..." I walked in on my Grandpa coughing up a LOT of blood once. He said, "The doctor doesn't know why, so it must not be anything."
OMG 😳 Also the generation of “the doctor says it’s nothing to worry about so I’m not going to question it”.
My adult child has recently been diagnosed with eds but during the process we have had this conversation. They would always say "maybe it's in my head. Maybe there's nothing wrong". I would remind them, most people's daily pain is at a zero. What is your daily pain? 5? 6? Not normal. You are not making this up.
When I tore my meniscus and could barely walk... I told them my pain was at an eight. When they asked me when I went to my doctor what my normal pain level is I said a two or three. When they got my MRI results.... The number one question was "how the hell are you even able to walk?" Because my knee look like shredded cheese. I have no cartilage. I sublux my two knees around a hundred times a day. My doctors just decided A pain scale isn't going to do it for me. Because if me walking on those limbs was a two or three... My pain scale isn't worth discussing because it's astronomical Instead, they asked me how it is affecting my life. How much work am I able to do how much housework am I able to do how much does it affect my social activities. And I think it's a much better meter than an arbitrary pain scale for which every person has a different level of pain. It also reminds me of when I used to have my periods and I worked at a women's clinic and it was a really slow day and I was crying from the cramping because there was no one around so I didn't have to put on a brave face. And they hooked me up to the monitor that tells you how much pain a person giving birth is in. My contractions made it look like I was 8 cm dilated that's how strong the contractions were. I think I told them my pain was a five or six that day. A "normal" person does not experience pain daily. The average person doesn't have to footnote their pain tolerance.
It’s funny bc a person who is always in pain is generally perceived as having a low pain tolerance, when in actuality, I’d say we have a pretty high tolerance, considering we live our lives tolerating pain all the time.
Exactly!
I get that feeling too, like it’s not really an issue, that my pain is normal and I should just suck it up. What then reminds me that it’s real is when I physically can’t stand up because my knee won’t support my weight, or when I stretch my arm and my shoulder jumps out of its socket for a second
its so nice you validate them because when you're in pain almost every day you kinda forget the fact "normal" people don't experience any:/
Most people's daily pain is zero. I had honestly forgotten about that. I tend to undermine my own pain, I need to remind myself ot that every now and then. My dad also has the same attitude. He's in his 70s and undermines my pain by listing his pains. I'm 41, but been like this since I was a teenager. Also I recently discovered a brain aneurysm and he immediately said he had an aneurysm in his stomach. Like mine is no big deal. Sigh.
This was it for me. I started to doubt myself a lot, but I couldn't ignore the pain a lot of the time. The more I was told that nothing was wrong, the more I felt like I couldn't trust my own perceptions.
lol that sounds like my family. My issues with hypermobility/subluxations are the worst out of everyone else, but joint pain is something that’s common in the family. I grew up w/ joint pain + migraines, but was told it was normal or that they were “growing pains”. I’m 20 and 5’1”. Definitely not growing pains anymore lol. I’d say it’s definitely possible your family has it. I’m like 90% sure that most of my family has some variation of it, but maybe not all of them fit all of the diagnostic criteria. My mom’s stretchy and has pain but not near as bad as mine for example. But yeah, daily pain isn’t normal. Didn’t learn that until my doctor asked how much pain I was in everyday. Apparently “the normal amount” wasn’t the right answer lmfao. I’d definitely insist on getting him to a doctor to get some education on the condition.
>they were “growing pains” oof. If only I had a dollar for every time I heard that as a kid. My poor mom probably felt so helpless and confused :/
me too😭😭 I haven't grown since 6th grade and they would still try and tell me that in 8th grade and high school and I'd be like ????????😭😭
Ah yes... growing pains. When I was 12 I went to a physiotherapist and showed her how my wrists would grind and snap when I moved them, and I was in pain all the time now. My ankles were shaky, and pretty much all of my joints moved unusually and too far out of range. She said it was growing pains, and gave me a printout of exercises to do. There were about 400 repetitions on it to do everyday. I could manage about 20 and then I end up in bed for the rest of the day. When we went back to her she said that if I couldn't do the exercises, she couldn't help me. We knew I had problems with hypermobility at that point, but she dismissed that too. I should probably go back to physiotherapy now I'm older and have so many new issues, but I still remember that experience, and it puts me off. People don't realise the huge impact dismissing pain can have.
I was told 'growing pains' too... *I'm so glad we've all found each other here.* Always in my joints, a dull ache, worst in my ankles, knees and hips for as long as I can remember. Not all the time, usually early morning and late night strangely.
Me too!! Growing pains. Or some docs would say it was magnesium deficiency so I should take epsom salt baths. And then, when my kids were little, I told them the same thing about their leg pain. It's all I knew (this was long before I knew we all had EDS). It's what I was told about those same pains, so that's what I told my kids. I feel so incredibly guilty now. If they had continued to complain about it hurting, I would definitely have taken them to their pediatrician (who probably would have said "growing pains," but that's beside the point). But, they didn't say anything about it again, so I figured it had stopped. No, actually, they had just internalized that they shouldn't complain about pain. I didn't hear anything else about pain until my youngest was 16 and it was so bad that he couldn't ignore it anymore. My God, I feel so incredibly awful that my kids suffered in silence. Please please listen to your kids!
You realizing and admitting fault, and finding the root of why you acted that way, is definitely something most never do. You’re already way ahead of most on that front. If you don’t have the vocabulary to discuss what is wrong then it never happens, and now we know words like “hypermobile”. If my parents did half of what you just described, I would feel less terrified at the prospect of inevitably needing to rely on them. I can’t work and live with other family.
The normal amount of pain is the same as the normal amount of suicidal thoughts. Both are zero. “Normal” people only in pain because they are sick or injured. That’s what pain is for, to tell you that something is wrong. Sometimes people develop pain as they age because their bodies are old and injured and worn out. But you should be in pain at 16 unless you are sick, injured or menstruating. It is our normal but it is not normal. If he has chronic pain and thinks it’s normal to just be in pain by moving and walking then he has something wrong with him because it’s not. It’s just his normal and he doesn’t understand that most people doesn’t experience this. It’s the same with training, if you work out hard you will be in pain, no pain no gain as they say, but it will be a dull muscle ache and if your joints hurt something is wrong and you need to stop before you do permanent damage. If it’s anything other than work out muscle pain something ain’t right. I was convinced by physiotherapists that I was supposed to be in pain and it would get better and I would become more stable and stop hurting if I just kept at it. I did not. It never happened it just got worse until I quit. Because neither they or I knew that I was severely hyper mobile and as a result I have done permanent damage but training wrong. Fuck I have even been walking and standing wrong. I got myself a great physiotherapist that understood hyper mobility and that retrained me on everything. Changing how I hold my body and how I walk and stand and everything. Helped a lot.
I thought constant pain was normal too until I was diagnosed. EDS is genetic, so it’s possible that he has it too and passed it down to you, but is so used to that that he thinks it’s normal. Joint dislocations (in the abscence of trauma) are not normal, and neither is constant “normal” pain.
No, it’s not. Even doctors perceive our symptoms as normal because people have back pain here and there, but chronic pain at 16 years old is not normal. I had that too. It took me until age 33 to be taken seriously. You know what you know. 💛💛💛💛💛💛💛
I think the most realistic answer that I can give is "it shouldn't be, but sometimes it is". Meaning that no, people should not be in pain regularly. Not unless they're a boxer or something who's actively doing things that cause hurt. Obviously if you make a habit of punching a wall every day hand pain is going to be a normal part of your life... and maybe also frequent wall repairs. But just day to day life stuff shouldn't hurt. Not on a regular basis. All people will experience some pain sometimes. That's unavoidable. But it's not a normal or average or routine part of life. Or at least it shouldn't be. Walking normal amounts shouldn't hurt. Sitting at a desk or in a car shouldn't hurt. Writing a letter shouldn't hurt. Existing shouldn't hurt. But for a lot of people there is some part of life that does hurt and they just kinda accept it. That does include a lot of able bodied people who just have this one quirk like bad posture or repetitive strain injury. It doesn't always have any particular impact on people's lives beyond just kinda hurting. It also unfortunately includes people who are in some way disabled or have an "actual problem" that does impact their wider life, but who don't realise it. It's unfortunately pretty normal for people to dismiss pain when it shouldn't be normal to be in pain. Honestly I feel like for some people it even gets to the point where they can't really accept it because it would mean shifting their whole world view. Like they could be supportive and accepting of another person in the exact same situation as them, but applying that to their own situation would go against years and years of how they've perceived reality and viewed themselves. So they kinda keep existing in this state of unknowing stubborn hipocracay. People are weird. But anyway, if you feel like something isn't right then something isn't right. You should be comfortable in your body. That doesn't necessarily mean any one particular thing. But just you feeling like something is up is reason enough to look into it. Even if everybody is always in pain and that's normal and they just get on with it then you not being able to just get on with it would be a thing. One way or another there's something happening. If your dad also has similar issues with some things he may well be one of those many people who's accepted pain for one reason or another. I think we're only just starting to get out of that deep "deal with it. Suck it up and keep going. Perseverance is strength, self care is weak" type of mentality. Hopefully he'll eventually learn that he doesn't have to just deal. And hopefully he'll be able to get some relief. Whether or not that does happen for him you don't need to let his experience with life make you doubt your own. You don't have to accept suffering just because other people do.
it’s not normal. my mom was the same growing up (though she has learned a lot through my sister and I who are now both diagnosed), and she thought it was normal, because it was her normal. she likely has it as well.
The normal amount of pain is no pain. Unfortunately some people (who also are in pain) don't really get this and lean into a suck it up mentality, probably because they were dismissed so long too.
I (42f) was always hurting my ankles and wrists when I was growing up. It was always ignored and I was told to ‘walk it off’ and would get in trouble if I limped. I had a “low pain tolerance” for many years even though I worked a manual labor job for a couple of days with a broken bone, before going to the hospital to get it checked. Even when people -including doctors- knew some of the pain that I’ve had, still said that I have a low pain tolerance, that pain was normal and that it was all in my head. It took me 4 years before finding someone who believed me and told me that it was not normal. I think though that for your dad, it IS normal because that is all he knows.
People thinking you have a low tolerance for pain is so real. If anything, I think my tolerance is high due to sitting through migraines for hours on end. And many 12+ hr shifts on my feet. But despite all that, family members/friends will write you off as whiny and over dramatic— it always irritated the hell out of me 😭
I got the same thing from my mum. It's taken me until very recently to convince her that she's where I got my EDS from, because for years and years, every time I brought up a problem I was having, her response would be to tell me that it was just a part of life. Aching joints? The cold will do that to you. Twisted ankles? Gotta be careful on that uneven ground! Constant exhaustion? Welcome to adulthood. It didn't help that my dad is an amputee, and due to being from a working class Presbyterian family he was not permitted for even one minute to give up and "become disabled". So, y'know. If the guy who's been walking on a twisted femur with a dozen blisters in an ancient fiberglass prosthesis for the past 50 years can get by without a parking placard, what's your excuse? 🙄 It truly shifted my entire worldview the day someone told me that the normal amount of pain is zero. Genuinely zero. In your whole body. All the time. Like, for most people being in pain is a notable event. Because their baseline is none.
My father is the same way. ‘Pain is normal, you just have to learn how to ignore it.’ I tried to explain the spoon theory to him one time and he said ‘That applies to everyone.’ It is so frustrating.
To quote my PT. The normal amount of pain is zero.
"The normal amount of pain is zero." I don't know who said it, but it blew my mind, I can't imagine having zero pain, but apparently it's the normal amount.
The thing that blew my mind about the pain scale is that the vast majority of people go through life at "0", no pain at all. Pain is one of the ways our bodies signal that something is wrong. Saying that being in pain daily is normal is like saying having a fever everyday is normal. It's just not true and not how human bodies work.
> "Life is pain, highness. Anyone who says differently is selling something." *The Princess Bride* I grew up around adults who all had chronic pain from various issues. When I complained about pain, they told me that it was just how life is. Consequently, I never took my pain seriously, meaning I didn't find out til I was in my 30s how to manage it. I am glad in one way, because if I was told this wasn't normal, I probably wouldn't have learned to keep going despite the pain - learning what is acute and and needs treatment vs what is fatigue vs what is chronic inflammation has been a long process, with little help from medical professionals. If I'd been taught "pain is bad, do not push through", I'd have been disabled by it. However, I have had to unlearn some terrible messages so I definitely don't promote it as a philosophy. Chronic pain is more common than people without it think, but not as "normal" as people with it believe. In regular people with no compounding health condition (like EDS, Arthritis, spondylitis, etc) often treatable with lifestyle interventions (e.g. physio, accommodations, exercise) rather than medication. But that standard can't be used when talking about chronically ill bodies, because ours are by definition not the normal physiological form.
i have hEDS but i rarely have daily pain or any issues living my life. my GI symptoms have been the most prominent thing since i was a kid. maybe he’s more like that.
He does have GI issues, and we both have for forever. That’s a really good point! I sometimes forget how many other things come with hEDS. Thank you :)
If you’ve undergone chronic trauma and see someone who has no choice but to do the same, a common (albeit suboptimal) piece of advice is to just push through, since that’s what he learned he had to do. Like, my constant neck and hip pain is now “just my body saying hello,” when in reality it sucks… but if someone were to complain to me about similar annoyances, I’d probably tell them to minimize it too, in the genuine hope that it helped. Some hard truths are learned through experience and not through advice, and “this pain ain’t going nowhere so get used to it” is probably something you’d have to learn on your own before you saw the value in the advice.
Let’s be realistic, regular pain in a healthy, active, well fed, not over stressed person is not generally a thing. Most of us don’t fit this category, and those of us with chronic pain conditions will generally have some kind of pain on at least semi regular basis. That’s not to say you should just expect pain and not do anything about it. It’s not to say that your pain doesn’t deserve consideration and possibly treatment. But it is to say that if we have chronic pain conditions, we need to set reasonable daily pain expectations, and that might not be “no pain”. We do ourselves no favor when we say “but normal people don’t have daily pain so we shouldn’t have daily pain“ and then set that as an expectation rather than a stretch goal. Our non-zero pain levels will absolutely impact what we can do, how well we can do some things, how much assistance we might need in some areas, our medical care, and more. But it’s just the thing we have to learn how to work with. Like not having perfect vision, we have to plan for glasses or contacts or not being able to see well sitting in the front row. Trying to find any “should” that is appropriate to apply to all human beings is generally an exercise in futility.
I do agree that I can’t expect to have a 0 on a pain scale. I guess this is often in context of being on a walk and needing to slow down or start heading back and for him to say that whatever pain I’m in, he’s also in pain, so to keep going. Sorry, I’m not great at wording.
If this is the context then the answer is he is wrong. Overextending yourself puts you at risk for more injury. Folks with EDS often have a longer recovery period as well. While some discomfort is normal if you feel pain then something isn't right, especially if you weren't feeling that way prior to the walk. It took me a long time to realize this and it actually made a huge difference in my progress with pilates and PT. If I'm in pain I'm either doing the exercise wrong or I have restrictions from other muscles being knotted up that needs to be addressed before moving on. Life isn't cookie cutter and he shouldn't expect you to fit into his cookie cutter version of it.
That's valid. And a distinction he may need to hear. "Dad, I'm not trying to avoid all pain. I know I have to live in pain, I get it. But this speed is too much pain and not appropriate." (I'm an avid hiker, and while I've turned around on hikes for lots of reasons, I've never turned around due to pain. But last week, I got 2.5mi into a hike and my hip (which is a main area of issue) was hurting more and more. I have my own internal grading system for when I change behavior based on pain - this went from a one or two to a seven and when it did, that was my sign that I had to cut my planned six hour hike short by a lot and turn around. It would have been wildly irresponsible for me to continue on my hike at that point. I love hiking so much that I will hike with a six on the pain scale for this hip in the context of known pain, if it's steady, but that's a carefully considered choice, and not even then in all circumstances. Knowing when you need to stop or change something is VITAL to staying safe.)
No, it’s not normal.
It is not normal. I got treated like this a lot through my life. I would voice my concern about so and so health issue, my parents would brush me off and say I was either lying, exaggerating, or make up and excuse as to why it was normal. It is not normal for anyone, especially anyone under the age of 45 to be in pain even half of the time. I have asked so many people if they’re in pain all the time, and 90% of people I’ve asked tell me no. It’s not normal.
I’m also 16 and I get told this a lot, along with being told “it’s just growing pains.” I shouldn’t be spraining my ankle from walking from my room to the bathroom, thanks. It’s shitty that your dad is doing this to you, because it is 100% not normal. He’s 50, his body has gone through a lot more things and has aged so obviously he might go through the same things as you, but the difference there is that there’s a 34 year age gap, and you’re too young to feel this sort of pain. This is how I like to think of it: If this pain was normal, you wouldn’t have a diagnosis.
Actually... it's not normal at 50 either. Laying tiles for 30 years f.ex. will get you knees that hurt all the time every day, yes. Some sports come with a higher likelihood of early arthrosis, yes. But those are still not "normal". Some pain after an event that warrants it is normal. The occasional headache, for those with uteri some cramping is pretty normal, belly ache from eating too much/little/wrong,... Normal doesn't mean "suck it up" either, it's perfectly fine to treat a normal pain too. (Can even be a really good idea to do so even when someone does want to suck it up, stress gets in the way of healing, pain makes for odd movement patterns that can damage other structures, and untreated normal pain can turn into abnormal chronic pain)
Even at 50, regular pain is not normal. At 50 you can have arthritis or whatever but it's not normal. Pain is a emergency signal, "beep beep something is wrong". Even at 50.
Walking around with pain is not normal. The normal amount of pain is no pain at all. At least at a young age.
The normal amount of pain in a day is 0. We don’t what that is and he either has dealt with this his entire life or he is full of it.
It’s normal to him but popping out ribs and shoulders are not normal.
Rember seeing a nurse about my knee and she said "what about the rest of your body, any pain?" and I said "just the normal amount"... I was stunned when she said "the normal amount of pain at your age is none"
Chronic pain is not “normal”. It’s very harmful to both physical and mental health as well.
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Besides the reality your dad may have it and be gaslighting himself (was there really another option for prior generations?), his generation is also generally prone to telling everyone to “walk it off.” It’s bizarre. !8( anybody 50 or older seems to want to force every human to have the same circumstances in life they deal with. My older bosses always responded with serious concerns of mine (letting them know I’m temporarily inundated or overwhelmed, etc) with, “everybody is busy.” Your brain is real af. It is not normal, but lots of people see pain as a small talk thing or get mildly competitive when you bring it up. “Yeah, I know what you mean. My back hurts a ton, too.” NO! EDS is relentless torture and early aging. I wish people could comprehended that things can be bad even if their eyes don’t see it.
It’s normal when all you know is pain. My mom never believed all my symptoms were problems because she had them too, and they were all normal to her. She’s definitely got worse issues than me and aging doesn’t help make them easier. We will all experience more pain with aging.
My 93-year-old grandma never has pain and insists it's not at all normal, so I know there are people out there who don't hurt! I grew up with an undx'd EDS mom who had been in multiple bad accidents and had very chronic constant pain, so I always thought it was normal until the last few years when I realized I was hurting even more than my mom did at her age and I didn't have all the same accidents.
No it absolutely is not.
My mom was diagnosed at the same appointment I was. They had us both come in because they need a family history. She told me my whole life that “pain is normal. I take 16 Advil a day. It works for me” SIXTEEN ADVIL ADAY!!! That was genuinely her advice!! It isn’t normal at all. I also sat w her when she used the bathroom when I was small because her stomach was so messed up it took her hours to go. I now go weeks between bowel movements and learned my colon doesn’t work right. I’m pretty sure hers doesn’t either.
A good physical therapist would be able to teach you how to move without causing pain. Unfortunately, many of them are not good. But if you can, see if your parents can get you referred to PT and try to find someone educated in EDS. I do have regular pain but not 100% of the time and usually not unbearable. PT has helped me in that regard. Also certain dance training and yoga training helped me, the parts about avoiding hurting yourself.
I was going to pt for a while, but things only got worse… had a great guy (now out of the practice), and then he went on a break for a month and I had an absolutely terrible pt, insisted that I had to stretch, that’s the only exercises we did, told me it must be diet, and that “everyone is hyper-mobile, that can’t cause your pain.”.. so I’m not currently in PT… might be going back when I can find somebody.
Chronic pain is *common* but not *normal.* And if you struggle with it, you deserve support and to be taken seriously. Also, there is a difference between aching a bit or having a stiff neck and your pain significantly impacting your day to day life. I want to be clear - any pain at all is not normal, but there's another distinction here. I knew my wrist, shoulder and ankle pain was unusual, but I sincerely thought that since "everyone" had back ache and knee pain and a stiff neck, I shouldn't mention it at all. Newsflash: not everyone has this! They are not all just choosing not to complain about it, turns out they simply don't experience chronic pain! I was also unobservant enough not to realise that they weren't struggling to sit in a chair for an hour without getting completely overwhelmed by pain and fatigue. I was in so much pain that I found it difficult to follow simple sentences but for some strange reason, in my mind that was normal. It doesn't help that I grew up with someone else with EDS, so it really was normal in my house to be in huge amounts of pain and just get on with it. As [GaiasDotter](https://www.reddit.com/user/GaiasDotter/) said in another comment, "it is our normal but it is not normal". And also, there's not really a normal amount of pain for people with EDS either. You shouldn't dismiss it if you're finding it hard to deal with, just because you have EDS. Doctors will try, so you've got to fight for yourself there. Any amount of pain is not normal, but struggling with day to day tasks because of is an important distinction, and deserves to be taken seriously.
I have this problem! I'm 16 too and my mom is about 40. she says this sort of stuff to me all the time and idk what to do other than suffer in silence.
Respectfully, your dad should shut the fuck up.
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Just because he has normalized pain does not mean you should. He may not know a life without pain, and most older generations were told to suck it up. You are a child and should not be in pain.
He's wrong. I'm sorry that you are having this experience. It took about 26 years before my mother accepted that I was always in pain. I was often beat severly as a child for complaining or made to do strenuous chores/activities to "toughen me up." That's how she was raised and how she raised us. She said pain was normal. I cut my parents off when I was 18 and moved out. I'd rather struggle than be mistreated. Eventually my mom got parkinsons and the tables turned. Now she's always there for me and expresses how bad she feels about it. It took a lot of time and therapy to let her back in, but I'm glad I did. She's now becoming mostly disabled and lives her life in constant pain. I pity her. I pity the pain she's in being trapped in a dying body, but I mostly pity that she has to live with what she did to me all those years.
As a 51 yo male without EDS I can assure sure you pain is normal, be it back knees or whatever. As a 16 year old pain is not normal, at all. My wife has EDS. and a lot of the pain she suffers varies but it almost always ties back to EDS. It’s not imagined or normal. It’s entirely related.
Unfortunately, it is normal. But you get used to it. I don’t mention it anymore and my partner sometimes doesn’t get that I just sit with the aches. Then he calls me stubborn for not endlessly taking pain relief. Sweetheart you’re young, what your dad is feeling could be a combination of age & EDS. Regardless I’m 48 and I can no longer tell the difference between old age and EDS pain. Which sounds weird now I’ve actually typed that out. Stay active my dear x
Apparently the normal level of pain most feel on a daily basis is zero. ZERO. That blew my mind when I found out.
It is and it isn't. For those of us with EDS, it is our normal! We have to get to know the kinks and quirks of our bodies and understand our own custom limitations in any given time or circumstance. Considering EDS has long been under diagnosed, like for generations, those older than us have a differently-adapted perspective and language in that absence. It's worth listening to and then adjusting with current science and education (which, remember, can be liable to change considering new studies ongoing now) amd again with your own observance of your personal physical needs/limits. I have heard it is better to move some injuries around to keep blood flowing to the injury for healing, and I do absolutely believe that is a real thing we as EDSer's need to do possibly on a regular basis, especially since we are extra supple and prone to constant, chronic injury. I think this was also helpful when I broke my pelvis and couldn't really understand what my body was going through at the time... I just knew in instinct, or at least I think of it this way now looking back, as an explanation on how I acted naturally to get beyond the injury (it was weeks later I finally got an X-ray to see, and indeed the doc said I had a fractured pelvis and it indeed showed scar tissue or healing tissues having already made way). I was put on crutches and a specialized exercise plan (an adjust PT profile because I was in the army at the time).
I'm 32 my hubby is 43. I ask him constantly if my pain is normal and I'm just being a big baby. His constant answer is no it's not normal he's never had the pain and stiffness I endure
HE IS WRONG
Most people go to the emergency room if any of their joints pop out. Your dad's experience is definitely not the average