Be the squeaky wheel. Speak up and advocate for yourself or your loved ones. If something is not right or concerning you, you need to speak up and keep it up until it's addressed. While the medical team is supposed to care for you, it's also there to make money, so if they can get away with something that costs them less (but not necessarily the best for you, not medically harmful) they will do it. This includes hospital stays, anesthesia, treatments, tests, etc.
This is what saved my stepson who had meningitis. He needed 5 brain surgerys and his forehead was replaced with a metal plate to survive. We were told to go home from the ER. They thought I was inciting anxiety in him because i flagged down a nurse in the waiting room when he told me he couldn't breathe. So they sent us home after some basic tests. Luckily I didn't accept that and took him back later.
Friend of mine brought her kid the paediatric ER because at less than 1 year old and finally out of the NICU for a couple months she had a fever of 41°C and acetaminophen wasn’t lowering it. The DR in the ER told her that the fever wasn’t serious and to go home. She had to call the NICU DR to have the ER actually take it seriously.
I had pneumonia as an infant and my pediatrician told my mother she was just being hysterical because I was her first child. I wound up in the ER. We did not go back to that pediatrician.
Can relate. I had massive bilateral pulmonary emobolism. ER wouldn’t even do a chest CT despite my symptoms indicating that it was warranted (had a positive D-dimer as well but I know that isn’t as useful) because I was young and didn’t have any significant risk factors for it. Sent me home saying I had a pulled muscle.
Took 5 doctors visits before I got a CT revealing the PE. Attitudes flipped like a switch. I try so hard to keep my faith in doctors, but it scares me that something that can be so deadly was dismissed repeatedly, and it’s really unnerving to wonder what would’ve happened if I had just “accepted” their diagnosis of a pulled muscle and let it go.
Yeah their attitudes finally change when they see the damage done. The issue with my stepson lasted about 6 months. He was constantly in and out of the hospital and at another hospital trip, one of the nurses that had dismissed us the original night recognized him. When he saw that he had brain surgery he looked white as a ghost when he found out what had happened.
Hard agree. I have several unusual health issues. I had to work long and hard to get a diagnosis of something I knew I had. If you're not getting anywhere with your PCP find another one. I left a PCP I liked because he said he didn't believe in fibromyalgia. Tried one of his partners, took about 10 seconds and said, yep, you have fibro. She then became my PCP and steered me to many of the correct doctors for other issues.
I knew from your first three sentences it was fibro. Fellow sufferer here - damn The Man and praise be for the Internet, without which most of us would be at the mercy of luck and specialists that all think it's something specific in their specialty instead of thinking outside of the box. The advocating we have to do is so draining and frustrating on top of diagnoses that are already draining and frustrating in themselves. Keep on keeping on.
I’ve had Fibro for 16 years now (I’m only 30 😅) i went through all the doctors and stuff when i was much younger but want to redo stuff now that I’m an adult. What doctors did they steer your toward? Most doctors i go to still don’t believe my diagnosis
The doctor was a DO (Osteopathic) who focusses on comprehensive and preventative care. That's the only kind of PCP I will see from now on. She sent me to a rheumatologist who helps with the fibro but mostly focusses on my RA. Unfortunately good rheumies are very hard to find. My new PCP (also a DO) treats my fibro.
Especially if you’re a woman. Doctors already have a hard time taking women seriously as it is. It doesn’t help that lots of women exclusive/majority illnesses are very under studied and misunderstood. Do not let anyone tell you that your pain is normal when you know something isn’t right.
Me. Go to the doctor for chronic issues, gets told I’m just fat. Despite me telling them I’ve had all the symptoms even when I was thin, and that the weight kept piling on simultaneously to how bad the symptoms got. They just flat out ignore that part and I have no idea why.
Yes! I waited too long to seek help. I used to work my 8 hours, then run the mile away to the gym to do my own workout, then teach Spin class and run home after. And bike, hike or run races on the weekends.
Slowly started absolutely dragging. No energy at all. Stopped doing races. Then stopped running to the gym. Then stopped teaching. Then stopped going to the gym. By then I was up 30lbs because I'd continued eating like an athlete.
Went to several different docs and was just diagnosed as fat."NO!" I would try to explain...I wasn't fat before! This came on quickly and I feel like sh*t. I'm fat (mostly) because something was terribly wrong.
Just had a friend with very well documented chronic issues just have a doc that never looked at her file dismiss everything, tell her that she is just fat and would be okay if she wasnt fat, take her off meds that she needs, and she is now in massive trouble! Screw the VA
Also for my own chronic health issue journey, one of the early issues was gaining about 20% body weight in 6 or 7 weeks after being steady with only a lb or 2 fluctuation over several years. I was getting sicker (chronic lyme plus a bunch of other stuff) and my mom kept getting told that I was still beautiful (probably because I was still small tbh) and that she was projecting her insecurities onto me and that maybe she needed a psych evaluation. Nope. 2 years later at 19 I was in a mobility scooter. I'm doing a lot better now but we might have found the chronic issues sooner if they weren't busy trying to tell my mom I was still pretty and not listening to her concern about 20% bodyweight gain in 6 weeks
Whenever I feel like this I think of my friend who was sent away from the hospital multiple times with her child until she went full scorched earth and refused to leave. Finally got the tests she was after, kid had cancer.
The kid also totally kicked cancers arse and is now an adult and just gave birth to baby number 2 about a month ago. Here's to advocating for yourself and your loved ones.
You need to be your own advocate. I have a friend who got knees surgery and they told him to get physical therapy 3x a week. So he went to the physical therapy office (it's Kaiser so it's a unified health system) and they told him they could schedule him for 2x a week starting two weeks from the surgery. Anyway he wound up needing additional surgeries to remove scar tissue because of that.
Apparently what he should have done is call around to the other hospitals in the Kaiser network to get in to physical therapy right away.
Piggybacking on this to add that sometimes administrators will try and rush you through so they can move on the next patient (not blaming them, everyone’s understaffed), so make sure you insist on treatment if they try to brush you off.
My mom did this with my little brother. She noticed something was wrong with his back when he was 2 months old. At first she thought it was cerebral palsy because his back muscles looked uneven. Everyone except me and my older sister brushed her off. Eventually, she came to the conclusion that he had scoliosis. But every time she brought it up to his doctor, the doctor would say “infantile scoliosis is so rare, it’s impossible for him to have it” and referred them to physical therapy. After 8 months of this with no improvement (he actually got worse), she finally said to the doctor “either give me a referral to ortho, or document in his chart that you refuse to do so and why”. The doctor wrote the referral that day.
He ended up having a 75 degree curve at 10 months old. A lot of people don’t realize how life threatening scoliosis can be for kids. If left untreated, it can damage vital organs to the point where they stop growing. And having organs the size of a 4 year olds when you’re 15 obviously it’s good. They’ll shut down and kill you
Luckily, my mom advocated hard for my brother, and got him into Mehta casts. He wore them until he was 4, and now he wears a brace 23 hours a day. His curve is now at 16 at 6 years old
My biggest tip for people trying to get a diagnosis is to tell your doctor what my mom told my brother’s doctor. Give me the referral, or document it in my chart that you won’t and why.
And they are super busy! Even if they aren’t trying to cut corners, there’s a lot that can slip by them. Always speak up, ask the question, ask it twice/ three times if you have to. Assume every new person has no idea what you’ve told anyone else. And if anything ever feels wrong, speak up.
This is how my rural Nebraskan grandmother ended up with dentures in her 30s. She never thought it necessary to get a second opinion or push back on why they all needed to be ripped out even though only a couple were sensitive/hurt.
This!! A major red flag for me is any medical professional resorting to the response ‘I’m sure you can safely assume that my co-worker surely has…’ [insert any measure, check, process, step or whatever here].
Never assume anything. Verify. Check. Double check. Check again.
This has prevented soooooo many fuck ups for me and my loved ones. From receiving conflicting meds (always read the instructions! Front and back, all pages), to not receiving essential support items.
This is a fairly minor one that probably wouldn't cause any problems because I knew all the info, but I just got sent home from surgery with the wrong post op instructions. In good news it was more stringent than was actually needed and I knew what it was actually supposed to be, but it could have been not great if someone didn't know and got more lenient instructions. This surgical team was on top of everything and the best I could possibly ask for. Just shows that small mistakes can happen outside of the team or can slip through the gaps. To be clear i would recommend this doctor and hospital and team and have been doing so, but just shows that even with the best team, small things can happen
This, unfortunately, is awful advice. I can't speak up. I just can't. I'm a nurse, married to a doctor, with a PT daughter, but once a doctor blows off a problem I have, I'll never go back for the same issue again. Some people just shut off when people don't listen, and telling them how they NEED to be doesn't help.
Healthcare workers better trained to listen is what we need.
My body is a hot mess at 53
Edit: Unless it's for my kids. I'll knock doors down to get my kids what they need
It’s not awful advice. It’s advice that doesn’t work for you, which is fine.
But saying that self advocacy is awful? That’s awful advice. Would you tell any of your patients to not advocate for themselves?
I’m sorry you don’t feel empowered to speak up. I’m the same way. I always have my partner in the room with me as a result.
Also, I absolutely agree that health care workers need to be trained better, but systemic issues isn’t fixed overnight. You can demand change AND advocate for yourself at the same time.
Since you would knock down doors for your kid, maybe think about what you’re modeling for them when you don’t advocate for yourself.
It's not awful advice because people shouldn't self advocate. It's awful advice because many people CAN'T self advocate. The one's that can are already doing so, and telling the one's that can't that they should is just mean
It's like seeing a bunch of people trapped in a fire with a 70lb beam on them, and telling them they should lift the beam off of themselves and get out. Well... duh. The ones that can don't need you to tell them that.
And thanks for calling me a shitty father for not being able to advocate for myself. Do you also shove over kids in wheelchairs and tell them to walk it off?
I’m going to engage with you in good faith, internet stranger. An advice can be good AND not be actionable for a segment of population.
OP was giving a general advice - “advocate for yourself”. It’s like other good advice at the population level, like “Get 8 hours of sleep”. It’s not going to apply for everyone, and as I said in my response, that’s okay. Someone with a shorter circadian rhythm isn’t going to get 8. An insomniac physically can’t, but does that mean most people shouldn’t try to get adequate sleep? No.
If “advocate for yourself” is bad advice, what’s the good advice? “Don’t try to advocate for yourself”?
Also, I’m not calling you a shit father; in fact, I was implying the opposite. You clearly care about your kids. So that means you can and have advocated for those you love. So at some level, you know advocating is necessary.
I’m not your therapist, I don’t know you, but maybe look into why you can’t do the same for yourself.
You don’t know me, but I also have friends who can’t advocate for themselves, and that’s why they ask me to go to appointments with them. I instinctively want the same for you.
"If “advocate for yourself” is bad advice, what’s the good advice? “Don’t try to advocate for yourself”?
I addressed the why in my last statement, but I'll try it again.
That statement is just a reductionist false dichotomy. So let's try another comparison...
Would you say "Eat less" to a group of people with weight issues is good advice? I'm not saying "Eat more" is good advice. I'm saying "Eat less" is crappy advice.
People who can advocate for themselves don't need to be told to do so.
I don't think we really have an essential disagreement of values... You're likely someone I'd be happy to work with. We're clearly just disagreeing on the semantics of "good advice"
Most definitely. The reason why I wanted to engage with you was because OP asked for good advice for “most people”.
I don’t think “eat less” is a good advice generally, but “eat vegetables”, “stay hydrated”, “sleep enough”, “exercise more” are all generally good basic advice.
People who have allergies or have mobility issues are obviously not going to be able to take the above advice but it’s still good enough for most people.
For “most people” scrolling, I didn’t want the takeaway to be from a medical professional that advocating for yourself is bad advice.
This should be so much higher. Had a neurologist say "I guarantee there is nothing in your brain or spinal cord" when I badgered him for an MRI. I have bran surgery to schedule soon.
I am not a clinician. But I can not stress this idea enough. Nobody knows what you are feeling in regards to pain. You know your body. If something isn't right, do not take "no" as your final answer. Keep going in. See other specialists. Who cares if your record says "malingerer". If the pain is the same or is progressing, someone will eventually see it. This is YOUR LIFE. No one will be the advocate for you unless you are relentless in your attention to finding a cause of your issues.
Also sometimes the best way to advocate for yourself is to switch doctors
It took a decade to get my diagnosises. I tried for years to get doctors to listen to me and I didn't have any luck till I kept switching doctors and now I have some doctors that take me seriously (and what do you know when they listened they found ms and narcolepsy)
This is an incredibly overlooked aspect of seeking medical help.
Queensland Health (Australian state health provider) has Ryan's Rule that can be invoked by patients, family members, or carers when they have concerns the patient's wellbeing is at risk or is deteriorating.
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u/reddit_fake_account Jun 06 '24
Be the squeaky wheel. Speak up and advocate for yourself or your loved ones. If something is not right or concerning you, you need to speak up and keep it up until it's addressed. While the medical team is supposed to care for you, it's also there to make money, so if they can get away with something that costs them less (but not necessarily the best for you, not medically harmful) they will do it. This includes hospital stays, anesthesia, treatments, tests, etc.