How do you get medical staff to actually listen to you?

32 comments

  1. I sometimes ask my husband to talk about the issues as the doctor seems to agree with him more when it comes to even my issues lol

  3. How I got my thyroid and autoimmune diagnosis:

    “Oh, you’re saying that since I’m young and a healthy weight that I can’t have it? That’s great news! Oh, there’s still a small chance? Well, I’d like to take some blood tests to rule it out, since I have most of the symptoms.”

    Go in with a list of symptoms, possible diagnosis, and tests you want to get done. If they don’t think it’s likely enough to order a test, back them into a corner where they’d either have to let you have a role in your healthcare or take a chance on saying it’s impossible.

    When I do this, it often encourages them to actually pay attention to my concerns and add on tests for conditions that present similarly. It has the added benefit of sounding like I’m prepared to sue for the doctors who’d been super patronizing and flippant (I’m not, but whatever works).

    For competent doctors, the way I figure, when a patient comes in, they’re probably going to have something common. Doctors are going to get into a habit of expecting and diagnosing common things. When a thin 18 year old walks in, they’re not going to think “hypothyroidism” or “hashimotos autoimmune disease”. When the same 18 year old comes in prepared with specific things they want checked out, it’s a sign that something serious or different is happening.

  4. My dad is a doctor. He taught me proper medical terms and using them correctly tends to help. For example with my dentist I tell them the tooth number that’s hurting.

  5. One effective approach is to clearly communicate your symptoms, concerns and medical history, and actively participate in your own healthcare decisions.

  7. Be concise. List 0f symptoms, onset of symptoms, medical history and medications. Don’t start telling long stories ” it all started in the summer of 1991 when my friend was going to drive me to the mall, but she couldn’t drive do I had to go with this other friend snd their car smell made me sneeze”

  8. Don’t downplay your pain or issues. Be insistent. Be firm. Be specific with how the issues play out, how frequently it happens and maybe in what circumstances it happens in.

    If you don’t think you are being heard don’t be afraid to see a different doctor. I usually pick a younger, non-white woman as a doctor because I feel they can relate to me more.

  10. You need to remember the doctor works for YOU. You are in charge of your healthcare. You don’t need to be rude but firm. If you want something explored/discussed/looked at etc don’t back down. Doctors don’t always do what’s in the best interest of the patient but what’s easiest for them. I had to advocate for my ex husband and his autoimmune disease for years because he wasn’t confident enough to do so himself.

  11. I have a sister who is a doctor, so I start off my conversation with ‘I have a sister who is a doctor’ and then mention what she has to say about my symptoms. Works most of the time.

  12. I’ve only had this problem in Germany before. I switched to an American provider and I had a way better experience

  13. Food. I bring bagels/doughnuts/treats to my physicians’ offices *every* time. They look forward to my visit and roll out the red carpet for me.

    Should it be this way? No, however, it works.

  14. Get very very poorly. I had an ongoing issue that nobody would listen to me about. It wasn’t until I was in A&E, very ill, that anyone started paying attention and even then it was difficult. I’m pretty good at advocating for myself but it being a uterus related issue seemed to impact me being heard.

  15. I always request blood work at my yearly check ups and then request a copy be sent to me for my records and review. If something looks funny to me or is concerning, I go for a second opinion.

  16. I keep my sister there as my advocate, especially if I’m post seizure and sort of confused/non-verbal. We both know how the system is to women so we both have each other’s backs in this regard. Love the bell out of her for it.

  17. I have a genetic disorder called lipedema that causes my subcutaneous fat in my arms and legs to form like 40 lbs of tumors and fluid. And it took me like 24 years to get a diagnosis despite the primary symptom of that condition being *I’m not even exaggerating, 40 lbs of fucking adipose tumors in my arms and legs.*

    What did it was treating every suggestion my doctor gave to me, even the stupid ones where they were obviously trying to pretend this isn’t actually a problem and shove me out the door, as if they were a serious treatment plan demanding followup.

    So, like, 3 years ago I went to the doctor complaining of rapid weight gain disproportionately to my arms and legs that doesn’t respond to diet and exercise. Specifically, every time I came off my strict ketogenic diet I gained about 4 lbs overnight and just kept gaining. So she didn’t test for anything, didn’t examine anything, just talked to me about the importance of eating less than you burn, and handed me a printout about the food pyramid and sent me home. So I followed the handout to the letter. And when I gained 12 lbs in a week, I sent a message to the patient portal, and I said just super politely “Hi, last week I saw Dr. * about my rapid weight gain problems. She helpfully provided me with a handout about healthy eating. I’ve followed the recommendations on the handout for the past week, and have since gained 12 lbs. Is this expected? Or would it make sense to transition back to my ketogenic diet and request a follow up?” She set me up with a nutritionist, same deal with the nutritionist, nutritionist recommends testing the thyroid, etc. etc. etc.

    It took 3 years of going back and forth with “Hi, at our last appointment you recommended getting 8000 steps a day and practicing breathwork before every meal. I’ve implemented these changes for the past 6 months and am still experiencing the issue. What do you think is a good next step?” before I eventually got to somebody who can help me. But what it did was break me out of the decades long pattern where I’d go to the doctor for this problem, be told I’m just fat and lazy, and feel too ashamed to ever bring it up again and just go home and diet until my hair fell out.

    By treating every offhanded “golly maybe you should try Weight Watchers” as an actual medical prescription and documenting my adherence to these suggested avenues of care, I actually ended up with a medical record that showed 3 years of being a compliant patient who was trying everything that the doctor was willing to throw at this, and allowed future doctors to eliminate those things as avenues of treatment without having to test my testosterone for a fifth time.

  18. If they deny you a particular kind of testing you’re asking for, ask them to record in the chart that you requested it and they denied it. Sometimes if there’s a paper trail they suddenly change their tune.

  20. One thing I learned later in life is that doctors give you a diagnosis and something to do. Fine. But unspoken and not obvious to me was: you can return to SAME doctor and ask him or her to give you more options/different medication/ further help if the problem persists despite following the doctors’ instructions.

  21. If you have a scheduled appointment, and have access to your online chart (MyChart), I always send a message before the appointment. List your concerns and symptoms. It’s easier for you to refer to your chart and have written documentation so they can’t just ignore you.

    ER visits are hard. My partner’s mom is a nurse, and she was working when I was waiting to be seen. I’ve barely been taken seriously even with her there in the same room to advocate for me.

  22. What I do- this is an example. Say I want my thyroid checked. The doctor listens to my symptoms and disagrees. When they deny you a test, always say “well I’d like to see my chart notes from today to make sure you included you denied me a test I requested”. They will give you what you ask for. (This doesn’t apply to all medications)

  23. Do my research, be clear in my symptoms etc.

    Ask for what I want – eg. ultrasound, blood tests

    If it is refused, ask for them to document that they refused my requests and why. Ask for a print out of that notation in my chart.

    You’ll be amazed how many will backtrack when they are asked to document refusal. Tell them you’re getting a second opinion and want proof that you were denied at your general health provider.

    Lastly – as an absolute fail safe –
    Take a man with you. Husband, boyfriend, father, brother.
    As ridiculous as it is, pain is taken more seriously if a man confirms the levels of pain you experience. If he confirms you are *not* anxious or *overstating* symptoms or *exaggerating* the impact it’s having on your life.

    You have to be an outspoken advocate, have to have confidence and if you can’t – you need to take someone that can help you with that 💗

  24. I’m a medical translator and know the words – at first most medical staff does not take me seriously (chubby middle-aged punk witch in mismatched clothes), but the attitude changes when the vocabulary starts coming out. So – read up on whatever you need checked, write down your questions so you sound smart. And call them out on their BS if they won’t listen.

  26. If you want something done or looked at and they refuse it, tell them to write down in your chart that they refused it. Chances are they’ll do it to avoid a potential lawsuit in the future

  28. You have to be your own advocate. If you don’t have a connection with your provider- leave. Find another. Always keep notes and go in with a list. Your appointments are your time and it’s important to make sure you given them the full picture of what’s going on. Im sorry if you’re experiencing care that isn’t centered around you! Unfortunately, we have systems built around money and convenience of the system, not the patient. I know it’s frustrating and hard but there are way more good ones out there than it seems. Best of luck.

  31. I bring my husband into the room when I see the doctor and have him vouch for me.

    It works more often than it doesn’t. (I live in Asia)

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