Stress and fear during consultations with doctor

[Fauna]

Hello! My diabetes causes me huge amounts of stress when I talk to my doctor about it. Not only is the blood drawing a huge discomfort for me (I panic and the nurse can't really draw my blood correctly), but I feel like I'm being judged by the doctor. Of course, I know that I go there to seek help and for my own good, but the fact that I get forced to go there and always hear "Yeah, that's bad" and not too many kind words is just.. bringing me down. I recently wanted to get a new system - probably dexcom - for better control over my diabetes, because I don't want to fear my illness anymore and wish to feel better everytime I go to the doctor. To be honest, I just need a piece of advice from people who know what I'm going through and some support.. I never talked to another person with diabetes and I feel so alone in this, everyone always talks about the food, etc, but never about the stress. So, am I alone in this? Is it normal to feel like this? How can I fight the negative emotions I feel during every visit? I would appreciate it if you could let me know what your thoughts are about this, have a nice day and thank you for reading!

 

[Nicola M]

Welcome to the forums -

First of all I am really sorry you are having a poor experience with your diabetes team but it seems like you are heading in the right direction in terms of wanting to use a CGM to better understand how your blood sugars are day to day. I think doctors sometimes forget we are people too and need encouragement. Up until 2 years ago and going on hybrid-closed loop I was in what they call burnout, my control was absolutely awful and every doctors appointment was just me being told I needed to get better control. I think part of the issue is the doctors and nurses don't fully understand how we feel and what it is like to deal with diabetes day in and day out, I found I got better support when I was referred to a diabetic psychologist which could be something you could ask about and see if it is offered where you are. The biggest thing for me to turn my negative emotions into more "positive" ones was to just remember that at the end of the day no one is perfect, not even those of us who have "good" control, we all have bad days, weeks, months and it's okay, diabetes is not easy to live with and deal with every day. I don't enjoy having my blood drawn by any means but I know it does have to be done, I always look away and try to think of other things/distract myself whilst they are taking it, easier said than done though. Have you also spoken to your doctor about how you are feeling, as daunting as that may seem at the end of the day they are there to support you and ensure you have the tools you need to get where you want to be.

 

[Fauna]

Welcome to the forums -

First of all I am really sorry you are having a poor experience with your diabetes team but it seems like you are heading in the right direction in terms of wanting to use a CGM to better understand how your blood sugars are day to day. I think doctors sometimes forget we are people too and need encouragement. Up until 2 years ago and going on hybrid-closed loop I was in what they call burnout, my control was absolutely awful and every doctors appointment was just me being told I needed to get better control. I think part of the issue is the doctors and nurses don't fully understand how we feel and what it is like to deal with diabetes day in and day out, I found I got better support when I was referred to a diabetic psychologist which could be something you could ask about and see if it is offered where you are. The biggest thing for me to turn my negative emotions into more "positive" ones was to just remember that at the end of the day no one is perfect, not even those of us who have "good" control, we all have bad days, weeks, months and it's okay, diabetes is not easy to live with and deal with every day. I don't enjoy having my blood drawn by any means but I know it does have to be done, I always look away and try to think of other things/distract myself whilst they are taking it, easier said than done though. Have you also spoken to your doctor about how you are feeling, as daunting as that may seem at the end of the day they are there to support you and ensure you have the tools you need to get where you want to be.

Thank you so much for your support! Your advice is really helpful, since my appointment is coming up. I know that a diabetic psychologist is available, maybe not in that exact place, but in my city for sure. I just never really thought much of it, because I wanted to forget and live normally rather than talk about it. Turns out you'll struggle with that way, so maybe I'll look into that option. It wouldn't hurt to try.
To me, the blood draw is a bit of a complex problem. When I rest my arm in a position in which I get my blood drawn, I already tense up and literally break down crying.. it's a little embarrassing and I don't know what causes such a reaction in me, honestly.
As to your question, I haven't really spoken to my doctor about it. Mainly because of the negative comments I've gotten from the staff and the doctor herself, it's really discouraging to talk about your psychological problems with someone who seems to have an issue with everything you do. Still, maybe I should give it a go. For now, I have the struggle of an entirely new thing - dexcom - coming up.
Again, thank you so much for reading and replying. It means a lot to hear from someone who has similar struggles! From how doctors describe the "perfect results", it almost seems as if no one deals with burnouts and other diabetic issues. I didn't realize hearing that someone goes through that too would help me so much.

 

[Hopeful34]

If you find it painful having a blood test, maybe ask for some Emla cream, which you apply about half an hour before the test, and it numbs the area, so you don't feel it. You could also use this till you get used to using Dexcom, although it's not painful to insert.

 

[Fauna]

If you find it painful having a blood test, maybe ask for some Emla cream, which you apply about half an hour before the test, and it numbs the area, so you don't feel it. You could also use this till you get used to using Dexcom, although it's not painful to insert.

Thank you for your advice! Unfortunately, it's not the pain that bothers me, but the feeling of the band they put around your arm. It causes a defensive response in me and I'm trying to deal with it as of now.

 

[Juicyj]

Hello @Fauna welcome to the forum

Firstly you are not alone, this is quite common amongst type 1 diabetics, it prevents many from attending appointments and getting the care they need and they can fall to the wayside in regards to getting support and the latest tech. So the fact you are turning up for them is fantastic.

What is the driver behind your fear ? is it the fear of being judged ?

I used to have a fear of appointments, being told what to do etc etc, but would still attend, what really helped me is to firstly 'tell them' so before you start your apt just explain how you feel and how it affects your stress levels.

Also remember:

- They do not live with t1d, so if they tell you to try something do reverse psychology and ask them what they would do in your shoes ?
- You infinitely know more about your t1d than anyone else does, you live with it 24/7.
- Take ownership of your appointments, take a list, write things down, have an agenda of what you need from your meetings.

I think appointments can leave us feeling vulnerable as everything we do affects our t1d management and being told how to manage it can make us feel judged, however if you are being told 'advice' try to separate yourself from your t1d when taking this advice, you are not your t1d but if you can view your t1d as a separate entity it helps us to not take advice so personally or be so deeply affected. We sometimes hear professional advice delivered in a non sympathetic way, numbers and targets can make us feel judged, but if you view this as directed to your t1d and not you then it lessens the impact, the NHS are improving their delivery of information under the guidance of 'language matters' so it is improving all the time.

Well done for speaking out - and try and find yourself a friendly local t1d group to engage in if you can, I run a group in Worcs called Meter Mates so if you're anywhere near here come and meet us or join us on Facebook

 

[Fauna]

Hello @Fauna welcome to the forum

Firstly you are not alone, this is quite common amongst type 1 diabetics, it prevents many from attending appointments and getting the care they need and they can fall to the wayside in regards to getting support and the latest tech. So the fact you are turning up for them is fantastic.

What is the driver behind your fear ? is it the fear of being judged ?

I used to have a fear of appointments, being told what to do etc etc, but would still attend, what really helped me is to firstly 'tell them' so before you start your apt just explain how you feel and how it affects your stress levels.

Also remember:

- They do not live with t1d, so if they tell you to try something do reverse psychology and ask them what they would do in your shoes ?
- You infinitely know more about your t1d than anyone else does, you live with it 24/7.
- Take ownership of your appointments, take a list, write things down, have an agenda of what you need from your meetings.

I think appointments can leave us feeling vulnerable as everything we do affects our t1d management and being told how to manage it can make us feel judged, however if you are being told 'advice' try to separate yourself from your t1d when taking this advice, you are not your t1d but if you can view your t1d as a separate entity it helps us to not take advice so personally or be so deeply affected. We sometimes hear professional advice delivered in a non sympathetic way, numbers and targets can make us feel judged, but if you view this as directed to your t1d and not you then it lessens the impact, the NHS are improving their delivery of information under the guidance of 'language matters' so it is improving all the time.

Well done for speaking out - and try and find yourself a friendly local t1d group to engage in if you can, I run a group in Worcs called Meter Mates so if you're anywhere near here come and meet us or join us on Facebook

First of all, thank you for the great approach! Really, after fearing diabetes for so long I didn't expect everyone to be so friendly about it here. It's awesome and I greatly appreciate that. Again, it's great to hear that I'm not alone in this.
When it comes to the driver, I think it is the fear of being judged. Not only by the doctor, but also my family. Of course, they really care about me and I don't blame them for worrying about me (a little overprotective family members), it's normal. Still though, it's often "Why are you not doing that?" instead of "I support you, let's try to improve". I rarely get asked about what I feel even though it seems like it's common knowledge that diabetes can cause many issues, psychological too, as a person above said, there are even therapists directed towards improving life with diabetes. I think that the lack of understanding from my surroundings made me discouraged to try new things when it comes to diabetes and to try to focus on it. Still, right now I see that dexcom will probably be a huge help for me in my problems and the doctors recommending it to me, even though it was sometimes forceful, did suggest the right thing.
The advice you noted is really helpful! Focusing on diabetes as a problem we work on together with the doctor and not just feeling like they're pointing out our mistakes is a very healthy mindset. It's a shame that doctors do not implement such things, it seems so logical that we shouldn't take it personally, yet we still do it.
I'll definitely try to reach out to a t1d group, I want to make getting healthier fun and not a burden, my goal is to start living with it rather than run away. I'm glad that I finally realized that and that the people on this forum helped me with that! Again, thank you so much for your help!

 

[May Mic]

I sometimes ask for a smaller needle for blood draws., it helps. The band is uncomfortable for sure, ask if there is an alternative to it, i.e. can you squeeze a ball?
Tell them you are anxious, they may be able to help you relax, distract you, explain why the are doing what and when and why. It's the fear of the unknown that often causes us to tense up.

I'm sorry you are finding it so rough. Do reach out, there are lots of people here who have gone through similar issues, have advice, can emphasize and sympathize.

 

[Fauna]

I sometimes ask for a smaller needle for blood draws., it helps. The band is uncomfortable for sure, ask if there is an alternative to it, i.e. can you squeeze a ball?
Tell them you are anxious, they may be able to help you relax, distract you, explain why the are doing what and when and why. It's the fear of the unknown that often causes us to tense up.

I'm sorry you are finding it so rough. Do reach out, there are lots of people here who have gone through similar issues, have advice, can emphasize and sympathize.

I've been trying to fight the response by using a blood pressure cuff, it makes me have the same fear and when controlling it myself I find the fear of it a little. Also simulating the blood draw by putting my arm in a position similar to the one I have to be in during the blood draw makes me have a similar feeling. Tears just flow to my eyes instantly, so at least I know that I can get used to the feeling by doing something at home which is fantastic. I'll have to consult with my nurse about the things you mentioned for sure, thank you for your kind words, I really appreciate them!

 

[Zhnyaka]

it became easier for me to live when I realized that most people, especially those connected with me by profession, do not want anything from me and do not feel anything about me. They have a lot of patients and simply do not have the emotional resource to condemn each of them, they just want to do their job and go home. Usually if you say something like "oh, you have so many people today, you must be very tired" or something else relatively personal, the person becomes disposed towards you. You can also say something like "when you say that everything is bad, I give up, I feel like I can't handle it." Doctors are not sadists and do not take pleasure in the fact that the patient is suffering. Besides, saying "oh, I'm so nervous before taking blood" helps you not to keep your feelings to yourself and the nurse is trying to help you somehow, at least distract you with a conversation.

As for the people close to you who really love you, you can usually just say what kind of support you want. My best friend and I once wrote each other instructions on how to support each other in a difficult situation, because, for example, I don't like when someone is next to me when I feel bad, and she, on the contrary, needs it. Just ask for something like this, not in the form of a claim, but a la "could you do it like this"?

In principle, if you need support, it is not necessary that a person also suffers from diabetes, it is enough that this person is just your friend and worries about you. Even if a person has T1, they still don't feel the same as you, but in order to provide support, you don't have to feel the same. If you have a friend with whom it's acceptable to whine to each other, just use it. Usually people are willing to support those who support themselves, so if you let a person complain about their problems, then you will also be supported.

cgm is a cool thing, besides you can't see its needle

 

[Juicyj]

Fab advice from @Zhnyaka

I think it's such a good point not to take anything any professional says too seriously, we become too fixated on ourselves at appointments without realising that we are one of many, sometimes they get us confused with type 2 too which can impact on the advice given, I once met a consultant and knew that he'd seen a person before me, quite young with an amputation, it was in fact an ice breaker when I asked how they could be helped in that situation, it was denial with taking insulin, he discussed mentoring to help them as advice from another type 1 would be empowering for them, my appointment was just a tick box, are you doing ok one, so nothing major but it was from that point the idea of starting a group and that Meter Mates came alive and would be an open door, all welcome peer support group idea going forward. Running a small group means 'we all get it' and the noise from the chat is sometimes deafening as t1d's feel such a sense of relief in talking to others and learning new things. Definitely try to link up with a group, if London based there is a great group on Facebook 't1d London Meetups Group'. hope you find some real t1d friends who can help support you.

 

[Lainie71]

I've been trying to fight the response by using a blood pressure cuff, it makes me have the same fear and when controlling it myself I find the fear of it a little. Also simulating the blood draw by putting my arm in a position similar to the one I have to be in during the blood draw makes me have a similar feeling. Tears just flow to my eyes instantly, so at least I know that I can get used to the feeling by doing something at home which is fantastic. I'll have to consult with my nurse about the things you mentioned for sure, thank you for your kind words, I really appreciate them!

You are not alone with the bp cuff, I have literally taken it off and refused to have my bp taken and bolted for the door on more than one occasion! I am getting better but having white coat syndrome is something I deal with even at home when testing! I have to look away when having blood drawn and my hubby has blacked out when having his taken, not fun to see or deal with when he was the stature of a rugby player at the time. I think its like a fight or flight response. Definitely flight for me! Truly hope it gets easier for you and that your medical team pull some empathy out of their bags, as that would really help you x

 

[Fauna]

it became easier for me to live when I realized that most people, especially those connected with me by profession, do not want anything from me and do not feel anything about me. They have a lot of patients and simply do not have the emotional resource to condemn each of them, they just want to do their job and go home. Usually if you say something like "oh, you have so many people today, you must be very tired" or something else relatively personal, the person becomes disposed towards you. You can also say something like "when you say that everything is bad, I give up, I feel like I can't handle it." Doctors are not sadists and do not take pleasure in the fact that the patient is suffering. Besides, saying "oh, I'm so nervous before taking blood" helps you not to keep your feelings to yourself and the nurse is trying to help you somehow, at least distract you with a conversation.

As for the people close to you who really love you, you can usually just say what kind of support you want. My best friend and I once wrote each other instructions on how to support each other in a difficult situation, because, for example, I don't like when someone is next to me when I feel bad, and she, on the contrary, needs it. Just ask for something like this, not in the form of a claim, but a la "could you do it like this"?

In principle, if you need support, it is not necessary that a person also suffers from diabetes, it is enough that this person is just your friend and worries about you. Even if a person has T1, they still don't feel the same as you, but in order to provide support, you don't have to feel the same. If you have a friend with whom it's acceptable to whine to each other, just use it. Usually people are willing to support those who support themselves, so if you let a person complain about their problems, then you will also be supported.

cgm is a cool thing, besides you can't see its needle

Hello, thank you for your amazing advice! Your point of view is very helpful. In some way I know that the doctor doesn't really care that much, but it's still some kind of stress. Still, with someone telling me that, it hits more and I'm very grateful for that!
My friends are great at helping me, but the real deal is my family. Of course, I had a lot conversations with them, but they take it as if I try to offend them and not negotiate about the approach, so I just try to distance myself from the panic if I feel like it's too much. After all, they love me and they're just trying their best.
Thank you for giving me your advice! It is very helpful to me, just hearing the words is already a huge step for me.

 

[Fauna]

You are not alone with the bp cuff, I have literally taken it off and refused to have my bp taken and bolted for the door on more than one occasion! I am getting better but having white coat syndrome is something I deal with even at home when testing! I have to look away when having blood drawn and my hubby has blacked out when having his taken, not fun to see or deal with when he was the stature of a rugby player at the time. I think its like a fight or flight response. Definitely flight for me! Truly hope it gets easier for you and that your medical team pull some empathy out of their bags, as that would really help you x

Yes, exactly! I have the same thing and I have no idea why. Most people think it's the needles, but the cuff is the real deal. I have it a bit better, I can kind of suffer through the tightness of the cuff, but only when I start to feel like I'm passing out and letting go of the emotions and tension as a result. Thank you for telling me your perspective, it's so nice to hear that I'm not alone in this!

 

[Zhnyaka]

My friends are great at helping me, but the real deal is my family. Of course, I had a lot conversations with them, but they take it as if I try to offend them and not negotiate about the approach, so I just try to distance myself from the panic if I feel like it's too much.

Well, there is always an option to say that everything is fine, so as not to be lectured on how to live properly. If you know that instead of support you will get condemnation, better change the subject and talk about something else. My family doesn't know about 80% of my problems.