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Feeling like my health care team doesn't care as much as they should

Does anyone ever get tired of feeling like your doctors aren't placing enough importance on your symptoms?
I've been struggling with sinus tachycardia and hypertension. It feels like there is no sense of urgency to correct it despite having lupus nephritis.
For both ER and UC visits after hours of sitting in a room I get a "Well, it's a little better now." And get sent home.
I tried explaining to my doctors that yes, I understand hypertension and tachycardia won't kill me right away, but it's interrupting my daily life. I have a job that requires me to work on my feet all day. I can't work when I start having tremors and I can't even relax at home when my heart rate is double what it should be.
All I get is "Do you need a doctor note for work?"
No! I want my life back!

What ways have you had success in conveying the importance of your situation to your care team?

  1. I think it can be a challenge to get medical professionals to listen to patients for a variety of reasons, . I wish communication weren't yet another challenge to deal with when it comes to your healthcare! I wish I could tell you *why* your doctors don't seem to take your concerns seriously, but your guess is as good as mine. Have your doctors suggested any treatments for your conditions? Like medications? Are you on medication for your hypertension?

    I am sorry I don't have a great suggestion for getting your medical team to listen to you and I hope our community members can offer some good tips for you to try!

    In the meantime, please know you are not alone in this and I take your symptoms and your feelings seriously.

    Best, Erin, Team Member.

    1. thank you so much for your support. Even just having a community to vent to that has the same frustrations makes a difference.
      My PC okayed increasing my BP meds but on a recent visit to my pulmonologist/sleep doctor she was still concerned about the tachycardia and pointed out BP meds don't do anything for it. She reached out to my PC but as per usual, everyone takes their sweet time getting back to me...
      I'm suspecting a cardiology referral and meds like beta blockers in my future (yay, more meds), but we'll see. I never had these issues until I started all my lupus meds, but I also have anxiety/depression so I'm thinking it's a side effect of one or both. I've had more appointments/medical visits/communications in the past two months than I've probably had my entire life and it's very overwhelming.
      Being diagnosed with lupus has definitely made me work on my patience!

  2. Yes, for sure! You are not alone in this one!

    1. Yes

      1. I can appreciate what you are saying about other opinions and I can't speak for others around the country, but here there are so few Rheumys, it's shocking. I was told there is at least an 18 month wait.

      2. , I wish I was shocked by that (because it's totally unreasonable) but sadly, it is all too often the case. I hear you, its not always as easy as deciding overnight you want a new doctor. One of our patient leaders recently shared some questions she likes to ask when she is not feeling fully heard by her doctor: I hope there is some tools that might be useful to you in her video.
        Gabby (team member)

    2. It's so hard to get doctors to understand the depth or symptoms. I have found I have to advocate for myself in so many different ways. I wrote an article about it
      If you don't take anything from that article do take this... being open and honest with your communication with your doctor is important. That includes being upfront and unhappy with the care they are providing. Sometimes it is an uncomfortable conversation that needs to be held. I know it is so frustrating but maybe having a honest conversation with your doctor can help. Some doctors are in a habit to just go through the motions until someone points out otherwise. I hope that helps some. ~Racquel ~ team member

      1. I’m’m sorry to hear that. That is just not acceptable. You shouldn’t have had to worry about that. ~Racquel~ team member

      2. I am blessed to have a great team of Doctors. PCP, Pulmonary and Rheumatologist. I asked lots of questions. My Care team answerers them always. Communication is very important.

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