Navigation

How to avoid sugar coating doctors visits?

Hi all, 

I was wondering how you all avoid sugar coating how you are feeling when you go to the doctor? I have a pulmo appointment tomorrow and feel a bit nervous/uncomfortable about going to tell them (resident and pulmo) how much I’ve been struggling. You know it’s bad when you want to walk in and say can I please restart pred? 

The first time I saw my doctor I had an asthma control test of 12. I repeated it last month and got a 19 with all of my meds + prednisone, but tried it again and am back down to 15 after weaning off prednisone. Asthma is interrupting my sleep again and I’m needing more albuterol and seeing yellows again.

I’m not sure what the rub is? Wanting to be a “good patient”? Not wanting to say sorry! The plan isn’t working? Maybe denial? I know what the right answer is; the doctor can’t help you unless you accurately convey your symptoms. 

(Sigh) Chronic illness is tough! I wish the recovery were linear, rather than 🎢 and easier to find the right medication combo. 

Thanks for listening! Best, Em

18
96

Comments 18

  • LK

    I think it is all of the reasons you mention.  I do the very same thing.  

    I even have a list when I go in and somehow between me reading it to myself and asking my pulmo about it, I whittle it down and rephrase it so I don't sound like I am complaining.  I have an easier time telling it like it is to the nurse when I call but I still don't lay it all on the line.

    I think some doctors, if they are intuitive, start to have a scale to gauge each patient.

    When I was going to PT last summer, I was talking with the therapist and he said after a few visits he can tell a lot about how a patient handles pain and things like that.  He would always ask each patient what the pain in the particular area was today on a scale of 1-10.  He would know that for some patients, a 6 really meant a 9 or 10, because they never wanted to admit it really hurt.

    Some doctors have the same skill.

    Still don't know how to not sugar coat what I tell my doctors but I hope since I have been with most of them for years that they can tell from what I say and how I am acting how I am truly doing.

    Would love to hear anyone's suggestions!

  • Melissa G

    It's hard! Bekah tends to sugar coat things when she talks with her dr's. I have encouraged her to be more honest by saying, you are not going to get the help you need and get better if you are not honest with the dr's.

  • Deborah Bartlett

    Being a good patient means walking into the doctors office with a list of your issues and your questions. It also means being 200 percent honest so your doctor knows the proper way to treat you. Doc cannot know what's going on unless you let he or she know! 😀

    Save the candy coating for your dessert! You can get the best treatment by telling your doctor everything! 

  • Deborah Bartlett
    LK posted:

    I think it is all of the reasons you mention.  I do the very same thing.  

    I even have a list when I go in and somehow between me reading it to myself and asking my pulmo about it, I whittle it down and rephrase it so I don't sound like I am complaining.  I have an easier time telling it like it is to the nurse when I call but I still don't lay it all on the line.

    I think some doctors, if they are intuitive, start to have a scale to gauge each patient.

    When I was going to PT last summer, I was talking with the therapist and he said after a few visits he can tell a lot about how a patient handles pain and things like that.  He would always ask each patient what the pain in the particular area was today on a scale of 1-10.  He would know that for some patients, a 6 really meant a 9 or 10, because they never wanted to admit it really hurt.

    Some doctors have the same skill.

    Still don't know how to not sugar coat what I tell my doctors but I hope since I have been with most of them for years that they can tell from what I say and how I am acting how I am truly doing.

    Would love to hear anyone's suggestions!

    Some therapists and doctors can tell how much pain you're in by looking at your face. I guess our facial expressions tell all! 😱

  • dory2005

    I have a tendency to do this as well. I remember being in the hospital, barely able to breathe, and the dr asked how I was. I croaked out that I was feeling better, and she said that if this was better she hated to see what I was like earlier.  

    For me, I do think it tends to be a bit of denial as well. Sometimes, I have a hard time knowing my limits, and I push myself harder than I should. I'm working on being more honest with myself about my symptoms. I've also promised myself that I won't ignore symptoms anymore.

  • Shea

    I think it is good to think about how you want to feel… And then how you are feeling right now. And just admitting what is coming into your senses and consciousness and writing it down. Just a quick jot in a notebook, and then setting it aside. Itll help to refer to that during appointments.. Because memory can be short-term or you can forget how bad you felt WHEN you actually felt it… So writing down when you feel it is best. 

    Sometimes I think or write about what I feel about the visit and what I want out of it…. Very frankly to myself, and then more editted version to make it appropriate. Sometimes I feel I am dealing with a lot of emotions and anxieties that deserve respect in their own right but that I dont want to throw down in the table there, but there is a sort if "take-home" message that I can express there. 

  • Emelina

    Thanks all for your wisdom and suggestions:

    Lisa, thanks for letting me know I’m not alone in this conundrum. I like the idea of making a list and whittling it down and rephrasing. Melissa, very true, they can’t help us without an honest picture of what things are like outside of the office. Debbie, I like how you reframed the “good patient” as the one with a list, questions and 200% honesty and yes, I’ll save the sugar for dessert. Dory, Thanks for your perspective, I think there’s a denial component too for me. If you candy coat, it’s not really a problem and will go away! I will follow your lead and not ignore symptoms. Shea, I love the idea of the journal, and considering how I want to feel vs how I feel now. There is a lot of power and insight too into writing things down as they come into one’s consciousness. That’s a good thought too of what I want out of the appointment.

    i feel better about tomorrow’s visit. I’ll sit and generate my questions, concerns and relook at the list tomorrow. You guys are right. We are just patients, not “good or bad” based on how we’re doing. It’s medicine and disease; it’s not once size fits all and it would be a miracle if the first treatment plan worked perfectly for everyone. And I’m not doing myself any favors by driving 400 miles to say things are great when they are not. There are no brownie points for a 20 vs 15 score. I’ll channel the little engine tomorrow … I think I can! Thanks all.

  • LK

    Good Luck with your appointment tomorrow Em! Have a safe drive ! Please let us know how it goes when you have time.

  • Pljohns

    Em-good luck with your appointment.  I too tend to sugar coat things and push myself WAY farther than I should.  I have learned to go into appointments with 3-4 questions/concerns written down.  I keep a notebook and when I get back to the car, I write down the pulmo's answers.  If it's something like new meds or a taper, I take notes while I'm talking to them.  I've found by going back over notes from previous visits, that I often have the answers to questions that have resurfaced.

    Being 100% honest with ourselves it hard for me-I ignore symptoms until they are so bad I can't ignore them any longer.  Chronic illness are just tough i guess-maybe we all  want to "wish" them away and that's why we ignore things.  I'm learning to try and listen to ME and do what  I can. I still push myself but that's my version of not giving in or giving up.

  • Emelina

    Thanks Lynn, I like the idea of limiting it to 3-4 questions and taking notes. That’s a cool strategy too about going back over prior visit notes to answer resurfacing questions. 

    It was an odd visit. Very numbers centric. Fev1 and Feno improved from 8 weeks ago, so he thinks I’m doing better. 😳 I mentioned the difficulty with breakthrough symptoms off pred, so we’re going to continue max dose triple therapy for 2 more months + antibiotics.  I don’t know why I’m sad … I should be elated about improving numbers. I guess improvement is all relative. I am wayyyyy better than Jan-March and I’m not stuck in yellow, and not incontinent or vomiting from coughing and waking every night. 😢

  • Emelina

    I think the thing that frustrates me the most is how the rule of 2 doesn’t apply to us. I wish poorly controlled symptoms would still be a red flag that things are not good. 😰 I hate waking up at night, I hate wheezy attacks, i despise the unpredictability, I hate not being able to keep up with my kids. I know it takes time … it took me 6 months to get sick, I should expect at least 6 months to recover. I’m just tired of all of this.

  • Deborah Bartlett

    I was told that there are no more medications for me to try. I knew that, because we had tried them all. On the inhaler chart at the doctors office, I remember using the inhalers in the 3rd row. I said to myself- What happens when I get to the bottom, final row? Well-I am living with that bottom row now. Doing my best with what I have. No where near ready for oxygen with my COPD- thank God. I have been struggling and battling this awful weather and highway exhaust fumes. I have been on Prednisone since November. Never been on it that long until now. If it turns out that I will need to try biologics, then so be it. Being proactive and avoiding triggers is a MUST!! Wearing a mask in public is a must as well. Avoiding germs is right up there. Worrying is not going to make symptoms disappear. It creates more symptoms. I can't live my life worrying every minute about not being able to breathe. I learned that a long time ago. I'm glad I did. Let's all be thankful for what we have! ❤😉🙏

  • Emelina

    Great point Debbie. I was thinking I’d start my day thinking about things I am grateful for. 

  • Deborah Bartlett
    Emelina posted:

    Great point Debbie. I was thinking I’d start my day thinking about things I am grateful for. 

    You've got your boys! That's a good reason to start your day with a smile….every day! 😀

  • Shea

    Debbie, I really identified with " I can't live my life worrying every minute about not being able to breathe" because I had been at that point too. I was on less prednisone and was reacting to so many things and needing my inhalers more and my skin was breaking out and with my disease the allergic eosinophils get in blood vessels and organ tissues too– I was reacting to secondhand dander on the neighbors clothes, I was just emotionally and physically messy. And I did not want to live like that. I tried immunosuppressants, and some biologics, I had trouble with a lot of the inhalers with side effects and I was tured of bouncing up and weaning down on prednisone. That is when I found that stabilizing dose of prednisone. It really helps put a cushion on things for me– that it makes it worth the cushion on my body and all the other side effects. Although I am very slowly inching my way down from here. So– I am very grateful for prednisone for my particular situation. Although I very much would like to keep this stability and be off it too, and that is my goal. 

  • Pljohns

    Sometimes it's so hard to find anything good when we are struggling so badly but we all have good things in our lives and it can always be worse.  At least there are meds for us and we have good doctors.  I think part of it is still the grieving process for what we can no longer do and the life we had.  Maybe sugar coating doctor visits are our way of trying to make ourselves believe that it's not as bad as it is.  This is definitely a work in progress for me-I'm pretty straight and don't candy coat things except for doctors visits or how I'm doing.  I tend to drop a full 10 pounds of sugar on those 2 things.

    Deborah-I'm right there with you.  There are no meds to control the type of asthma I have and there are no other options for me to try.  I can't even try biologics even if I wanted to.  I don't meet the criteria for them but because of the reactions I've had to so many meds, they won't even give me the option of trying them.  I'm pretty much stuck with what I have now and hope it doesn't stop working.  Pulmo flatly told me that if I get a serious respiratory infection, we're going to have a major problem-there are only 3 antibiotics left that I can take and 2 of them are going to be pulled from the market due to tendon ruptures if you're on them.  Makes life tough-

  • Emelina

    Debbie, that is a wonderful reminder. First thing in the morning I always kiss all three of them on their foreheads. They are little so sometimes they wiggle away and wipe the kisses off; they are such little characters. 

    Shea, you write so well and capture the struggle well. I’m glad you’ve found that stabilizing dose! I identified with the “feeling physically and emotionally messy.” I think I’m in that stage too, but still trying to inch my way to stability and a better physical and emotional place. I’m exhausted today but managed to go out for coffee with a friend. The lungs are howling but life goes on. 😍

    lynn, I loved the 10 lbs of sugar saying. Yup, I’ve done that many times. But I’m learning from you guys. I cut out the sugar and had good result at my recent pcp appointment. It makes me feel a bit uncomfortable/vulnerable to let them see the bald faced truth, but how can they help without seeing the full depth of symptoms. I think you are right about the denial piece. Chronic illness is tough. I will keep hoping and praying for no major infections for you in the future. One thing that I’ve noticed more is I put more hope in clinical research. Here’s hoping the coming years brings more and better treatment options for all of us. I worked in an infectious disease/protein/drug discovery lab so I can tell you I know people are working hard on new antibiotics. I like to think of all the bacterial cultures bubbling away and yeast growing in labs around the country. Hope is growing, literally. 😍

  • LK

    Em,  That sounds so familiar about kids wiping off kisses!    Hadn't thought about this since ours were that little but when we started "patting in" kisses when they would do that.  We would give them a kiss on their cheeks and gently pat it in.  Then when they tried to wipe it off, we would say, with a smile on our faces and in our voices, "Nope, can't wipe it off.  We patted it in! "