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how do i ask them not to tell me the numbers?

endocrinegremlin

Well-Known Member
Messages
433
Location
Scotland
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
People telling me how to control my diabetes. My health. Isms. People walking their dogs off leads in illegal areas. Meat that bleeds. Late buses.
Even trying to write this is churning my stomach and yet it seems so little compared with the struggles of others.

cw: BDD dieting, mentions of weight





I have not been to clinic in three years. Because they weigh me there, and then the nurses tell me and they comment. I cannot handle it. I suffer from BDD. My notes contain records of when I lost weight pre-pump on a programme (one of those the magazines flog ect) and now it is held as my standard. I got down to a weight to the point where if I bought bras told me that if I list more weight they could not get a bra to fit me as I would have a child's back size and British sized JJ cups (yes you read that right.). I was miserable. My back couldn't support my chest. I was obsessing over every number. Carb, calorie, carb calorie, ect. I'd starve myself after hypos because I had lost carbs to treating it. I was praised all the time but was a mess.

Once I let myself eat again, without the counting, I gained weight. I am now bigger than before. The last time I was at clinic I was smaller than now and they made a point of telling me that I had 'a sustainable weight increase'. Given we are weighed in chairs I felt like a scorned child. Again. When I had DKA as a kid I was underweight and was scorned and had X put on growth charts until I was heavy enough without getting any advice on how to properly do that other than 'eat more'.

I could not face being scorned that way again in clinic. I can't face being weighed. My nurse says that if I go and tell them not to tell me anything they can't but I don't trust them. I've asked them that before as I was recovering from DKA and they told me anyway.

I don't want to cause a scene because I refuse to go in. I don't want to have an argument because I have social anxiety and the thought makes my stomach curl. I just want to deal with my diabetes.
 
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I have absolutely no experience of your difficulties but one potential solution could be to take someone as your advocate. Who could explain to staff you have had issues you’ve had previously and tell them not to tell you and have the discussion for you. Or decline to get on the scales at all until you are in with a single consultant with whom you can explain the problem you fear. Again a friend to do the explaining could help here too.

Is really weight such a fundamental part of clinic that they can’t assess you otherwise, eg by making a reasonable guesstimate in lieu of the scales. I can’t imagine that people with histories that include eating disorders are unknown to diabetic clinic. They should have processes in place to facilitate diabetic care without aggravating your health in other ways.
 

Honestly I don't know how important it IS but it APPEARS to be. When you rock up you go through two ....I should not call them trials but...anyway. The way my clinic is set up is the waiting area faces two doors. The first, you are brought into and if you are under 18 you are measured and then weighed. If you are older you just trot in and sit in the scale seat and...get judged. It FEELS like you have to go through this door to progress to the next where they take blood for your hba1c. Whether that is true or not I don't know. The nurse that said they couldn't talk to me if I didn't want them to didn't offer the option that I could just skip the room.

Only once you have passed these two rooms is your folder put on a tray where a Doctor might collect it sometime this century.

I do like the idea of an advocate but there is a part of me that says 'you stopped taking your mummy 12 years ago, you should be able to do this' but . I understand I am ill and that isn't a bad reflection on me.

It is hard.


Thank you for your thoughts.
 
Next time any healthcare professional tells you to do something, smile and say ‘no thanks’. If you don’t want to be weighed, don’t sit in that chair. Tell them to write ‘patient declined’ in your notes.
 
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I’ve been in other clinics where the do exactly the same. Often for no apparent reason. If it is clinically relevant they can always go back to it. If you can, just do as @wiflib says and sweetly say no thanks. If not then an advocate isn’t your mummy (but it could be). Plenty of reasonable responsible adults take someone with them to medical appointments as a second pair of eyes ears AND lips. Medical appointments can be scary, confusing or confronting depending on the the staff the hold them and or the issues that the patient may have. In fact it is recommended to take a friend if you feel this may even possibly apply to you.
 
Would it be an idea to send the clinic an e-mail explaining your anxiety? You could easily use a copy of your question as written above and tell them this is what you asked on a forum for diabetics.
If you get a supportive answer, take the printed mails with you to show everyone before they ask you anything.
And definitely take a friend if that makes you more confident. A friend is very much not your mother!
 
Hi @endocrinegremlin ,

Judgment is not where it's at.. But health care & wellbeing should be fact.

Are you having any form of counselling regarding what's happening?
 
@endocrinegremlin sorry to read about your anxiety.
I agree with the other comments about explaining your situation and bringing an advocate. An advocate is not the same as taking your Mum - my Mum always takes my Dad to hospital appointments as she likes to have a second pair of ears to replay what was said.

I don't understand why they have to weigh everyone every time when they go for a diabetes review.
My weight rarely changes. I am clearly not overweight or underweight. But they need a number filled in on my records which they never comment on. So why do they bother?
 
@endocrinegremlin - My answer to so many of these things is to write it down, and I would write it in a letter, sent by post, to whoever your named consultant is. That way, you know it will get to them for reading. Most Consultants have PAs who scan both post and emails to prioritise what goes in front of them when.

I'd always ensure my email address was included in my letter, so that there's an easy, cheap way of the reci[pient responding, if they feel it appropriate.

When we write something down, it's not always easy, because all those feelings well up and we can get angry. I know that happens to me, when it's something I feel is important. However, the beauty of writing it down is you can re-read it and correct any little errors and ensure you get all the points you want to make are included.

I usually write those letters in advance of an appointment (even with my GP), so that they will have read it, and had the opportunity to think it through, rather than have it presented to them when I'm sitting in front of them. I know they're experienced at thinking on their feet, but when I want some different thinking, I like to give them time to do it.

If you were to just shuffle your original post on this thread around a bit, I feel positive you would have the bones of what you want to say.

Many moons ago, I was incredibly ill with an eatring disorder. I almost disappeared, literally. It has shaped aprts of my life, and in some ways has made me stronger, as much as it scarred me. In time, there will be positives come out of this time.

Would you consider ticking their boxes, by sitting in the chair, provided comments are not passed? I'm sure all they're looking for are significant changes in weight. Downwards could be a sign of poor control, or trigger some thoughts of DKA, and an increase could be thought to trigger thoughts around insulin resistance, so I can see why they like to do it.

When I was first diagnosed (T2), I was, frankly, terrified. I needed to change my way of eating. I was terrified I could slip from not eating some things, to really not eating again. I wasn't weighed at the outset, and for the first 3 months I did step on a set of scales. I only stepped on some scales, in a hardware store, because my shorts were falling down! (I was on a long sailing trip.)

Thankfully, my worst fears weren't realised, but I think I'm telling you that to maybe try to reassure you I understand how insidious these things can be, and how small things to others can feel BIG to us (and I don't mean in BDD Terms, I mena in terms of emotional wellbeing).

I'm sure there comes a point when a clinic visit really has to happen, like when your pump comes towards renewal?

Have a think about writing that letter. It honestly has worked very well for me in the past, and I don't find myself walking out of appointments realising I've forgotten to say certain things, or I got too frustrated whilst sitting in front of the person to think straight.

If we can, we'll help you.
 
@endocrinegremlin sorry to hear this. I also always feel judged but have not reached the anxiety level you have (yet).
As you are walked through the dots tell them you do not want to know the number, as you approach the scale repeat please do not tell me the number as I have body related issues - please read the notes.
I hope you can find the strength to do this as a first step and maybe one day question the hair situation if that makes you more unhappy.
 
Sorry to hear of your rough times.
I think putting your thoughts in writing, as suggested above, and sending a copy to the consultant is good advice. Take 2 copies with you also - one for you to refer to, and another to give to them if they claim not to have received your letter.

RE:advocate - you say "I do like the idea of an advocate but there is a part of me that says 'you stopped taking your mummy 12 years ago, you should be able to do this' but . I understand I am ill and that isn't a bad reflection on me."

When I have any medical appointment the involves complex information, my wife comes with me. Before we go, we talk about the questions that I want to ask and write them down (and have a copy each). I ask the questions, but if I miss any, my wife will ask it. I also ask her to write notes of what the doctor/nurse says during the appointment. When we go into the appointment, I introduce my wife to the doctor and have never had a query about why she is there. When we get home we go through the notes and discuss what we should do next.

I do not have the difficulties you do, but I know that in a stressful situation, people (me) do not remember everything they want to say, and also find it difficult to take in remember complex information. (There is lots of psychological research that shows this is very common). I don't see this as a bad reflection on me, I think it shows that I want to get the best out of my medical appointment. I recommend taking someone you trust with you, and discussing beforehand what you want them to do.

You want the best care for your diabetes, and the medical profession should not put barriers in your way. Good luck
 
I do the writing down what I want to cover thing too. I also make sure it is visible during the appointment, and whomever I am seeing knows I have an agenda.

My GP has got so used to this that if I go to see her, she either asks to share the list, or asks at the end if she's ticked all my boxes. We usually laugh about it.

Sometimes we have to help our HCPs have the appointments we want and need.
 
Hello there. I had bulimia when I was in my teens/20s and have always hated the scale since then. it does my head in! I handle the 'phobia' by asking the staff either NOT to weigh me or NOT to tell me. I think the fomer is preferable.
I am avoidant for fear of becoming obsessed with what is just a number but do not know if the anxiety I still feel would have lessened had I just gotten used to the number and the self-judgement it leads to for me?
Anyway you won't cause a scene IMO if you are calm and polite. On the other hand are you getting help with your issues?
 
BTW I think the clinical reason for weighing type 1s is probably to check whether we are getting insulin resistant or need doses adjusting due to a loss or gain of weight. It is just something that is easy to measure but my DSN is not remotely bothered when I refuse it!
 
It’s highly unlikely to be any qualified personnel doing it either and just something the HCA’s do because ‘that’s what we do’.

I argued with one once because he wanted to take some ‘routine’ bloods at an appointment I’d been given following an A&E admission the week before (they were done then). He didn’t even know what the tests were for and had no idea that as a human I could accept or deny what he was offering and I also told him that I did not want the waiting room listening to my confidential information so if he opened the door again after I’d shut it, twice, I would be having a word with his supervisor.
He did not like that one bit but tough, that’s how it is.

HCA’s are not a regulated body and work under direct instructions, they are not autonomous practitioners and if you don’t want to be weighed, don’t put your bum in that seat.
You have the right to be autonomous over you, your body and your care.
 
 
Totally understand where you are coming from. I get totally wound up about my diabetes appointments now only because they don't understand low carb or individualising therapy but want to keep quoting the 25 year old DCCT study that were in patients DIFFERENT TO ME. (GP fine, specialist patronising, DSN was unhelpful until this last one who was much better). The scales are often where everyone can see them - completely insensitive - and they do not give you a choice but just tell you to get on them. I agree with the advice above, choose what works for you: letter in advance and take it with you, decline politely, take an advocate who can explain how you feel without getting upset or angry.

My mother used to comment all the time about my weight since I was 9 years old (often stood over me on the scales every day for my teen years) and through adulthood - positive if low, negative if high - both felt terrible as she was always judging me on my weight. She bought me scales when I was about 25 years old (which I threw in the bin and told her I had). It really screwed me up and I banned her from any further discussion of any kind about my weight. And felt so much better and empowered as a result, and much better weight management without her "help".

Good luck. There's also the option of a psychologist if you are still battling with it all.
 
Thank you for all the responses.

I will use some of these tips. Feel overwhelmed to reply to each person but thank you all, really.
 
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