Feeling frustrated!.

[Niccigrace]

Needing to sound off. Just spoken to my lupus nurse, who is a lovely person but I was ringing because I have a issue with Pain and usually I would just up my steriods for a couple of weeks , give myself a boost and then taper back down but obviously because of Covid didn’t want to do this and needed advice. But before I could even get to say what I was phoning for she takes over the conversation reading out bits of my medical backgrounds and typing. I understand they have to right notes whilst you are talking because they literally haven’t got the time in between patients but is it just me. I just want to have 5 mins to tell them what’s going on and for them to give me their full attention, look at me and just listen. The problem is the Nurse keeps interrupting and repeating things I have said and typing and I end up totally confused and forget what I wanted to say. So frustrating.

[Neriah]

Hmm, yes I've had similar experiences where I've felt managed and organised rather than heard. This has caused me to think that I might be woffling on too much and that I 'shouldn't,' because 'other people are worse off than you'. (That's my mother's voice speaking.) I think perhaps I need to offload my concerns beforehand to someone who can 'hear' me before I speak to the nurse and then speak to her with a number of clear enumerated points, previously written down if necessary, which she can type down to her heart's content. Like you I don't think she means not to be helpful; as you say, just busy.

[KatieRL]

I have a similar issue with my renal doctor. I’ve often been to appointments and all I see is the back of him typing away - it’s really awful. For me, Lupus/Renal blood results are key and there are times when I feel just like a ‘number’. You are absolutely right, sometimes you feel nobody is listening!

[Niccigrace in reply to KatieRL]

Thank you for replying. That’s exactly it talking to the back of their head. I have a real issue with needing eye contact and surely by not looking at you they are not reading any kind of body language, which We all use everyday to know how our friends and family are feeling. I think so many problems could be solved with Just a conversation instead of a quick in and out and chucked a load of medication to sort it. X

[Lo_Lo in reply to Niccigrace]

Sometimes you just have to speak up for yourself or you get nowhere. Functional Medicine Dr. told me Insurance generally pays for the 1st 7 mins of your visit. ( Really explains why I always felt I got the brush-off, still asking questions as Dr. was running to next patient) use your 7 mins wisely. Write down concerns/ questions so you can be concise, direct & not ramble around too much. & Don't be afraid to say what is & isn't helpful for you. When trying get a dermatology referral @ the hospital, they called someone in to "physch-hold" me. This really upset me but instead of my usual reaction, I was very straightforward & direct. Told them this would not be helpful to me in anyway, that I realized my rash & itching was not their area of expertise. That they needed to send me to someone more qualified & demanded a dermatology referral. Got it by the way

[Paul_Howard Partner LUPUS UK]

Hi Niccigrace ,

Do you think you could politely explain to your nurse that you find it difficult having the conversations in this way and perhaps you could have an opportunity to explain and then do the notes together?

[Niccigrace in reply to Paul_Howard]

Thank you for your reply. Maybe I should . I worry about sounding rude. I really struggle with cognitive issues especially when it comes to talking about my illness. I get anxious and emotional and I just need to get out what I need to say before I forget. I understand not to waffle . I get so frustrated I avoid calling because the whole experience is just too tiring but then it leaves me alone and sometimes in unnecessary pain. I think you are right and I will just tell her. Thank you!

[Paul_Howard Partner LUPUS UK in reply to Niccigrace]

Hi Niccigrace ,

I'm certain that your nurse will be familiar with brain fog (cognitive dysfunction) from many of their patients. If you recommend a different approach to your conversations as a coping mechanism then I don't think they would interpret it as rude and would be happy to accommodate you - they might be grateful for you sharing with them if it helps you have a more constructive relationship.