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How do you get doctors to listen to you?

I have physical signs and my bloodwork reveals something isn't right. I'm having some other tests done, but because of insurance, they have to be done in a certain order and it takes forever. Months between. And in the meantime I keep getting more depressed because I'm in so much pain. Something or a few things aren't right.

What I'm experiencing is ruining my life.

Yet my brand new primary says, "I'm not worried about it."...

Wtf does that mean? I'm worried about it! I have almost no quality of life left and I get blown off?

How do you get docs to listen to you? How do you get them to care or do something? It's in black and white that my body is fighting itself. You diagnosed me fibromyalgia and said too bad.

I don't want to fall apart. I'm young and my son is young and I don't have any help at all. Why won't anyone take me seriously?
DerSilberneKonig1 · 22-25, M
You'll have to fight tooth and nail. It's absolute BS Doctors seem to think they know the bodies of their patients better than them, which is technically true, but last i checked they arent the ones who can feel whats wrong or not. My mom works for social services/cps and is under a very stressful workload and enviroment almost 24/7, she was having trouble breathing for months and felt a lump on her neck and they kept telling her she was imagining it because of stress due to her job, and she had something wrapped around her throat, idr what it was exactly, but they fucked around for so long she had to have a risky surgery to get it removed and ended up taking over a month off of work for it. She had to fight doctors for over a year before she finally found someone by threatening to sue them :/

Long story short, if you feel something is wrong, do not stop pestering them to look at you, or keep looking. and if need be look as far and wide as you can.Your life is worth more than their degree and no risk should be left unchecked.
AlchemyFox · 36-40, F
@DerSilberneKonig1 desert hot springs. When I was out there everyone used abbreviations
DerSilberneKonig1 · 22-25, M
@AlchemyFox Oh, didnt even know cali had those, ive mever been lol, assuming theyre good?
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I take you seriously. I can only suggest what I have seen work with loved ones (and a time or two, myself).

I don’t know where you live, so I may have no clue what obstacles may exist.

One: keep a pain journal. Idiotic, I know, but doctors tend to believe what they read and not what they hear. After all, people are telling them all day every day that they’re in pain. When you see a doctor, ask them to read it. Write down questions you have. Make the most of the time they give you. And tell them what you mean when you say it hurts. “It woke me at 1 am and kept me awake until 7.” “It hurts so much to shower I just cannot stand it when the water hits.”

Two: If possible, take an oblique approach to helping find pain relief. Can you get a referral to a pain management specialist? Their JOB is to know about pain.

Three: Ask for paper copies of tests. Keep at least a general record of what you discussed with your doctor and what action was taken.

It’s a maddening, frustrating thing to go through.

I hope it doesn’t offend - I’ll keep you in my prayers.
BlueVeins · 22-25
Doctors are awful about fibro. At a certain point, I think the dominant strategy is just to cycle through new doctors infinitely until you get one that actually goes along with it, but obviously that takes forever.
AlchemyFox · 36-40, F
@BlueVeins Yup! I've had five primarys in a year trying to find someone who will listen. I finally went batshit yesterday and got prescribed muscle relaxers and another round of physical therapy. I cried when I felt the pain melt away from the muscle relaxer. I break them in half so they'll last because docs act like I'm after pain meds.

It's actually really sad. It took years and a ton of tests, scans, bloodwork, ECT to be diagnosed. Then forever to see a rheumatologist. Insurance will only cover so much physical therapy/aqua therapy because you can't improve. You just manage the pain.

I hate it. Which makes the pain worse 😂
I’m so very sorry you’re going through this. I know you’re on your own which makes the situation even more challenging. The only thing that comes to mind is checking to see if there is a patient advocate you can access to help you navigate the healthcare system.

Was just skimming through this article:

GoodRx Health: What is a patient advocate and how can they help me?

Wish I could think of more, I just hate this for you. 😔
AlchemyFox · 36-40, F
@OlderSometimesWiser I will definitely look that up because I've had enough. If I'm not assertive enough I'm blown off. If I'm more assertive they think I'm after pain meds. I don't know what to do anymore. But I'm failing. Hard.

I need to be there for my son. It is infuriating to be blown off knowing I can't be the mom I want to be because of these issues.
@AlchemyFox It’s incredibly difficult to take on the healthcare system under normal circumstances, let alone when you’re vulnerable and not feeling well. I truly hope you can track down someone who can advocate for you. Not only do you need it but you DESERVE it!
@AlchemyFox
DragonFruit · 61-69, M
I'm sorry.
I've been very fortunate in that my doctor for the first 40 years of my life was my father and that my doctor since then is someone who reminds me of my father....he does listen, and we have good conversations.. He advises me about what to take for ailments, what not to take and when I need to have a test done to make sure.
I know that a lot of people are not as happy with their doctors and that some doctors aren't very helpful or even polite. ❤️
BobbyMoeven · 51-55, M
You are right ...

That is a terribly vague and demeaning answer considering that she knows your history that you are a single parent , why can't she treat you with the respect of someone that has suffered through dan adult
GlitterEater · 36-40, F
I noticed that after I got a PhD medical doctors starting listening to me more.
AlchemyFox · 36-40, F
@GlitterEater No doubt.
iamonfire696 · 41-45, F
I don’t know how it works in the US but my doctor will just send me to specialists if I need them. With the insurance and having to wait for tests, also you have to be in your network.

There are so many barriers. Is there anyway you can see a different doctor?
AlchemyFox · 36-40, F
@iamonfire696 This is the 5th primary I've had in a year. They're terrible. They referred me to a different rheumatologist, but they can't see me until the end of the year.

Part of it is where I live. Very gentrified beach area that has tripled in population in 5-10 years. Even to get the ultrasound on my neck takes months. And I'm struggling to breathe 😂 Then the PET scan will take another few months, and I've already had cancer. They should of given me the PET last year, but nope.

I don't understand tbh. But nobody has ever listened to me. Not until it gets so bad I'm in the ER. But they've known about my body fighting itself for years and years. Why won't someone help? Why do they keep saying it's nothing? When it clearly was and is?

And if I cry and get frustrated they act like I'm a nut job and I need psychiatric care. But I'm literally just SO tired of being tired and in pain. I hate my life. I hate existing and that's not me.
iamonfire696 · 41-45, F
@AlchemyFox that’s terrible, I thought health care in the US was supposed to be quicker if you were insured? You should have had a
PET scan.

You are having issues breathing because of the swelling in your neck and they are not helping you?

I had to bed my doctor to refer me to the Cardiologist now without having my holter monitor done because I keep having SVT episodes and can’t do that test until June 2 and if I don’t have an episode in the 48 hours I have it then I have to do it again.

It’s so frustrating. I hope someone will listen to you 🩷.

 
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