I’m frustrated by comments that suggest pain only comes with age
It's important to recognize that young people experience chronic pain, too
“One day, when you’re my age, you’ll understand pain.”
This might be one of the most frustrating and flippant comments I hear as someone in my mid-30s. Many who are older automatically assume that people my age don’t deal with any physical issues. Because my Ehlers-Danlos syndrome (EDS) is largely invisible, other than my bruising, most can’t tell that there’s anything “wrong” with me. So comments like this tend to make me bristle.
Usually, I hear this statement when someone older talks about dealing with arthritis, stiffness after lying or sitting down for a while, or something similar. But believing that pain or physical discomfort is reserved for older populations does a disservice to the 20% of U.S. adults who manage some sort of chronic pain.
I know people don’t intend these comments to be hurtful, but sometimes I want to reply, “Do you know how lucky you are that you didn’t experience regular pain until you were older?”
For years, I’ve dealt with debilitating, concentrated shoulder pain as well as full-body soreness and regular pain flares. And while I don’t think there’s an official diagnosis in my medical file, many physical therapists have told me I likely already have arthritis in my shoulder and my knees after years of walking incorrectly due to EDS.
I’ve since relearned how to walk so that I’m not incorrectly balancing on my bones and destroying my cartilage in the process. However, that doesn’t undo the damage that was already done.
Most of the time, I just let ignorant comments roll off me. When they’re not intended to cause harm, I don’t see the point in getting upset. But for some reason, this assumption about age and pain really gets to me.
Combating misconceptions
After many years of self-reflection, I’ve come to a conclusion: While most ignorant comments simply stem from a lack of understanding about EDS, this statement seems to suggest that I’m not “old enough” to have experienced chronic pain.
I realize people generally experience more pain and soreness as they get older, but why is pain perceived to only increase with age? The reality is that it can fluctuate over time due to illnesses, injuries, life circumstances, and so on.
Even though this particular comment tends to upset me in the moment, I don’t hold on to that feeling. I’ve learned that sometimes the best response is to take a deep breath and make a lighthearted comment that helps them better understand. For example, I might say, “Oh, I totally get it! I’ve had arthritis in my knees since I was in my 20s!” Most people are pretty stunned by this fact, and it’s clear they had never considered the possibility that someone much younger could be managing the same health issues as them.
I hope that by educating others, I can take tiny steps in helping people realize that not all health challenges are visible.
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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Comments
lynne wilson
Thank you for sharing. Just had this experience a few days ago with older person. Get really burnt out on this exact situation.
Gene Byrge
I've been dealing with chronic pain since age 11 when the local doc figured I had juvenile rheumatoid arthritis. If my joints hurt, it must be arthritis, right? 70 years later, after a daughter and a granddaughter were diagnosed with Ehlers Danlos, I finally know why pain has been a constant for most of my life. Those who don't experience it don't understand, and as I've learned over the years, it is useless to try to explain because they think it is oneupsmanship. So I just say "I hurt, therefore I am. If I hurt, I know I'm still alive." and leave it at that.
Shirley
I am 83 years old, diagnosed with EDS 2 yrs ago after my 27 yr old granddaughter was diagnosed at Mayo. My sister died suddenlym instantly (never been sick) apparently from EDS and I have been in pain with kinks/obstructions in my small and large intestinem numerous surgeries to undo blockages, once my small intestine was telescoped inside itself. My surgeries started at age 34 but I have been in excruiating pain for at least 6 years prior.
I definitely understand your frustration, along with "you look so health, now could you be in that much pain?". The comments I hated most was my GI doc after having had 2 surgeries, 18 inches of my colon removed and I was still in pain if I ate anything telling me he was going to give me a certain medication and come back in 2 months and if not better he was going to send me for counseling. I wanted to tell him that I was the Administration Assistant to the Director of Counseling/Mental Health (I am not a trained counselor) at the University of a certain state, and my boss told me I was the most sane person in the organization. When the doctor who is supposed to be trying to help you is putting you down you feel like you've reached the end of the rope. The pain was bad in my twenties and it is bad in my 80's.
Susan Stephenson
Agree, it's ridiculous how many older people see children, the number of young people and show their ignorance by saying " You're too young to be sick, have a serious illness, be in a wheelchair, be disabled, have pain." Does not matter if a person " looks fine," is walking, has a so called " invisible" malady or set of maladies, we all receive the same judgements and opinions of ignorance like elders only have the market on serious diseases, chronic diseases, limitations, significant disabilties, and pain.
Im soon to be 68 yo now. Think this mindset of ignorance and really outright stupidilty is bad now, should have grown up in MY era as a child enduring one surgery after another. OMGosh, see a child with full length leg casts in a wheelchair with blankets atop, legrests extended and the stares and comments were impactful. My poor PARENTS were often approached, taken aside, a million questions asked and I was " too young." Pain as a child- docs and health pros didnt believe. Can't have pain, too young. No curb cut outs, no HC parking spaces, no ramps, no access into multi story bldgs, no WC friendly apartments nor homes, HC bathrooms existed. My Dad used to pick me up physically after placing my WC on the curb and put me in the chair, push me where needed and then pick me up and piggy back me, esp when we vacationed and I couldnt walk far without needing my chair.
I can remember a Catholic run home where disabled residents lived: The name of this place was " Little Sisters of the Poor AND Infirmed."
Bottom line is " labels, judgements, and assumptions" abound. "Too young for pain, too young to be fat" assuming a child is eating garbage, fat, sugar riddled diet.
I was in the presence of a 78 yo woman 2 yrs ago whose niece (early 40's) she hadnt seen in yrs flew in from TX to visit fam on the E Coast. I took Auntie to the airport to pick up the niece with stage IV breast cancer, dying. Her niece saw us first, walked quickly towards us and her Aunt said to her : You cant be very sick with cancer. Youre fat. You were always slender. Cancer patients are always skinny." Never mind the massive steroids she was on just to breathe because ca was in her lungs massive rounds of chemo and talk about pain, mets from her cancer to the bone had left her nones as Swiss cheese with collapsed vertebrae everywhere. She complained of nothing following what I know had to be a long flight that nearly killed her...Oh, and nothing, nada for her terminal cancer pain...and yet she rushed to us on sight. She died 3 weeks later at home, 2 days after her visit here.
Personally, I explain nothing to anyone except long time members of my health care team. It's nobody else's biz what I live with, what has happened in my life medically since the day I was born. When outsiders, esp elders, ask about pain, they usually see this as an op to tell you all about the laundry list of their painful ailments and " Oh my back, my back." My response back was always " YOURE too young to have pain." I quit telling anything to ignorant ppl decades ago. Sooner or later, everybody has pain, often becomes a daily event and happens at any age. Then, their eyes will be opened...and they'll lean how the other half has long lived...since we were " young."
PATRICIA
Hi Karen-
Sometimes I wear my EDS t-shirts when I am out when I feel able to educate staff at my local pharmacy, UPS office, grocery store, etc... I see more compassion and assistance when I am their customer.
I want to share with you a little miracle I stumbled upon! I am a disabled RN and have had all over pain since before I was age 40. Recently I weaned myself off of long acting narcotics because I felt they were causing me more problems and pain than help. While waiting to get into my pain MD office, I was desperate to find something to help my overall body inflammation as I am allergic to all non-steroidals. My girlfriend has rheumatoid arthritis and swears by hydroxychloroquine- 200 mg twice/day. I remembered I had some on hand, my mom and I using it when we had Covid . I began taking them on my own as I knew they have little or no side effects having to wait 2 weeks to see my MD. To my surprise, I felt better within several days- not feeling upon awakening like I'd been run over by a truck- barely able to move, etc... and having to lie down most of the day. I continue to take it- now about a month later and have been able to do yard work for hours/ day- caught up on my housework, walk my dog, go to the beach and might try Christmas shopping. I no longer need muscle relaxers and pregabalin either! I know the EDS research suggests there might be an auto-immune component- which I highly believe. Tested negative for RA three times.
My Pain MD blew his top (you'd think he'd be happy I stumbled upon non-narcotic relief). I do not recommend weaning off of pain meds on your own- I did tell my MD after it seemed I would be successful. He prescribed Hydroxychloroquine for only 1 month and I now have to argue my point with my Primary Care MD to prescribe it- MDs have been brainwashed by pharmaceutical propaganda during COVID and while this medication helps me and those with autoimmune diseases, and is over the counter in EVERY COUNTRY other than the U.S.- MDs are hesitant to prescribe it. It can be ordered form pharmacies outside of the U.S. without a prescription.
I pray hydroxychloroquine continues to give me so much relief- I feel I have my old life back and my friends are totally shocked. I think there should be some EDS research using this to prevent inflammation and pain. I love your column and hope you do not mind me trying to help you and others. Have a Happy Thanksgiving and give your horse a hug for me!
Darlena Beard
I know that EDS is more then brusing or arthritis pain believe me, it really took a life time to find out that is what my son inherited from me. When he started crawling he would get bruises on his knees and then as he grew up, Scoliosis was found and it was very bad so bad the surgeon had to remove 3 ribs, but then I found out my son was a hemophilia. Then there was issues with fluid on his joints. He has endure so much to this day, about 2weeks ago his right arm popped out of the shoulder joint and it took 2 different hospitals to get it back in,1st one couldn't so transferred to 2nd and they got it back in till the next day it was out again.My son knows about EDS and so do I It's ALOT your cell tissue, joints, muscles pain daily, brusing and so much more.People with EDS endure this.
Robyn Kiernicki
When I was about 10 years old I was doing star jumps in a PE class. My ankles and knees and hips were really hurting. When I told my teacher she replied " no pain, no gain". That evening I told mum who took me to the Family Doctor. She said "Growing pains".
In those days the Family Doctor was "All knowing" and her proclamation was not questioned.
During high school I played Netball and that was pretty rough on the ankles, knees and hips as well. However, no one else complained so neither did I.
I came to the conclusion that I must have a very low pain threshold, I was just a big wimp.
I didn't want anyone to know so I never talked about it.
When I was 29 and in labour with my first child, the woman in the delivery suite next door was screaming like a banshee and I asked the nurse how far ahead of me was she ( wondering when I was going to be in that much pain). The nurse said "don't worry, you are already in a lot more pain than she is, it's just that she is Italian". To me it just seemed like such a waste of energy to scream.. When I was feeling overwhelmed at the prospect of hours more pain I decided that I would deal with it one minute at a time. I only had to get through one minute , and then when I had done that then I did it again and again.
A couple of hours later , in the final stage of labour , I found myself with my knees up behind my ears and a dislocating hip.
On reflection , I came to realise that no, I didn't have a low pain threshold. In fact, I believe that I have a high pain threshold.
I think that any child with chronic pain probably has a high pain threshold.
As an adult I have had dislocations in both feet requiring fusions (one needed a second reconstruction) , dislocated ankle, spinal fusion, both hips have been dislocated, both shoulders have dislocated multiple times because there are no tendons still intact to hold them in place. I was booked for a shoulder reconstruction two years ago and the surgeon rang me the day before and cancelled , he said he had been worrying about my surgery and after discussing it with colleagues had come to the conclusion that a reconstruction wouldn't work . I needed a reverse shoulder replacement. This was a fairly new procedure and there was no long term data, so he didn't do the procedure on anyone under the age of seventy. "Come back in five years and I'll give you two new shoulders", Meanwhile I have had cortisone injections which gave me great relief in one shoulder but had no effect on the other. Weekly physiotherapy has been of great benefit.
Meanwhile I have developed "flat back", which means my lumbar curve has straightened out and caused the upper half of my body to lean forward and shift my centre of gravity so far forward that I can't stand without holding on to something or I end up flat on my face..
At home I move about the house with the help of a walking frame but away from home I depend on a wheel chair. I now have a motorised one which has returned some independence. I couldn't push a chair myself because of my shoulders. My spinal surgeon has advised me that I need three more separate spinal procedures.
Staring down the face of five major operations in the next few years (and that isn't including the hips) I have decided that there are worse things than having to use a wheelchair and at the moment I won't be having any more surgeries.
My daughter and my niece both have EDS as well, and I feel sorry for them looking at their future in me. I am glad I didn't know what I was heading towards when I was their age.
But I never say anything like "wait until you are my age".
Sarah
People need to stop comparing themselves to others in general. When I saw that you ride horses, I felt immediate shock followed by a tinge of envy; no one that I know personally with EDS can ride horses due to knee and hip dislocation (including myself). In terms of kinetics, it has to be one of the harder activities for people with EDS. I have to remind myself that EDS looks different for everyone and that pain comes in all shapes, sizes and ages.
Karen Del Vecchio
This is a really important point, Sarah. We're all so different - I really struggle with upper-body stress (I can't even stir cookie dough by hand!), while my lower body seems to do much better. I actually wrote about how differently we all experience EDS a few year ago - I'm not sure if you read the column then, but if not you can find it here. Thanks for reading!
cugie
Yes, I completely agree with you, Karen. I'm in the UK and was told that by having Hypermobility - a person does not get early arthritis so my arthritis was 'normal'. It isn't.
My physical records go back further than the computerised records for Physio (Muskoskeletal) and I was advised by my then GP it was unusual to have Arthritis at 39! No one has ever explained what that comment meant for me and now because it can't be found as Dr's just file notes they don't read them, when physio ordered imagining, the damage was 'no more degenerative than others of the my age' so my now GP told me, 'now I don't want you to go home and worry over this'?!
So I'm worrying over nothing?
I think it means that the rate of degeneration had slowed compared to before while no one can find the previous X ray!
All of this means more pain and the pain I'm in means the same pain as anyone else simply because medical professionals can't 'find' the original X ray (while no one thought to look in my notes!)
So they don't realise how much pain I'm in and I've had to work out what has happened myself while i'm not medically trained!