No, not that kind of relationship!

I am talking about getting on well, building trust, understanding what they can and can’t do for you, finding supportive doctors.

This is something I have struggled with a lot in the past, in fact the last good relationship with a GP I had was when I lived in a different city, ten years ago. I have tried since then to “invest” in a GP. I saw the same one for several years, every 6 weeks and she let me down badly when I needed her on two occasions. Since then I have just seen whoever was available to try to get a feel for who was good. As I don’t go often this has taken a while. I have now settled on someone but how to proceed?

Today I went to see my POTS specialist and she was clear that she cannot deal with my other issues (that appointments are only supposed to be five minutes long!) and that I must use my GP and CFS support team (CBT-esque stuff) more for things like nerve pain, muscular pain management, sleep… basically all non-POTS things. I thought that these things could be considered POTS-related (certainly related to Autonomic Nervous System Dysfuntion) but apparently not. I am a little disappointed as I am concerned that my pain issues have become worse recently and I want to understand why. I do not expect a miracle cure but understanding and having peace of mind that it is not necessarily neurological deterioration or some such; which really only she has the expertise to talk about as she knows about ME/CFS and POTS and the nervous system issues associated with them. But I did not get to ask that today. She says I need to go to the Pain Management Clinic instead for help managing my pain. She did say it was for pain that was not caused my wear on joints etc therefore indicating that she thinks my pain is not part of some specific cause/condition. Not that sheactually knows this based on any examinations or tests.

She says she is not a generalist and cannot deal with all those health issues I have, only deal with the treatable (POTS) bits. So it is to the GP (the generalist) I am to go, but does he have enough knowledge about my specific conditions I wonder? I did explain to her that the reason I thought she was the person to talk to was that I was told I no longer needed to see the ME/CFS specialist any more because I was seeing her and that she could deal with the ME stuff too. I am not sure she registered that. I got the feeling she was annoyed that I was bothering her with so many symptoms. I think the fact that I dared to write to her between appointments to ask some questions about a current drug and the prescription that there was a problem with annoyed her possibly too. I am sorry, but how am I to know what the protocol is?

I have been thinking for a while I should make an appointment with him (the GP) just to go over our relationship, what he can and can’t do and to allow him to get to know my situation as a whole. I think he should have suggested this but that probably would be asking too much. Whenever I go in to the doctors I often have a few things to ask about as it is not easy for me to go to appointments I don’t go unnecessarily. It is less physically difficult to go now that I have my wheelchair, as I used to get a POTS episode every time just from sitting on their awful chairs, but it does mean i cannot go alone and need my partner to take time off work, so that is another barrier. So basically there is little time for general chat in these appointments as there is no time left once the essentials are done. This does leave me with the feeling that they do not remember me between appointements, nor do they follow up on things from one meeting to the next. I get the feeling I should not expect this, but if i am not getting that kind of care from the Specialist then frankly the GP is going to have to step up! Am I asking too much to have this kind of relationship and be able to talk to a GP about my symptoms, even if there is no apparent treatment? Certainly with regard to benefits claims I would think they need to know me better as what can they really tell about my functional abilities day-to-day from my medical records if we never talk about it?

Unfortunately there seems to be some antagonism built up between the GP and the Specialist, who seem to have offended each other regarding a prescribing issue for a drug the Specialist wanted to try me on and I am now stuck in the middle with both sides telling me the other is rude or unprofessional. I cannot help but think that this recent appointment with the Specialist was coloured by this issue as she was not quite so understanding or focussed as usual. It was useful to discuss how she saw her role towards me though and she has certainly set the boundaries. I feel a bit lost as to who to now go to who I feel understands my broader issues. I hope that the GP can fill some gap and provide some support to me. I think as someone with chronic illness it is hard to have a good relationship with a GP – time is always a pressure and it often feels as if they really have no idea what life is like for me. I find I am trying to convince them of my severity in the face of looking not too bad. If I need to rely on the GP I would like him and the specialist to have a good relationship too. That seems unlikely at the moment!

I have left the appointment today feeling that if the Specialist is only interested in the bits she can try to treat, then there is no-one looking at the bigger picture – the holistic picture and this must lead to both things potentially being missed medically and to a feeling that no-one gives a damn about me, how I coping, and that I really should not bother anyone about it as nothing can be done… However I know that I have symptoms that people regularly would go to a doctor about and they would get a prescription or an investigation, but because i am chronic it is all just part of the existing illness and stop thinking about your symptoms and just accept your lot.

To me, resignation to what i am experiencing and not caring to understand it, is depression. Who is caring about that? I am supposed to go to the CFS managment team for help me cope, but unless they have dramatically changed they cannot help me. Should I invest more energy into doing the rounds yet again with lots more appointments to only come out the other side in much the same situation or just try to find some nice things to focus my energies on and hope it helps me cope? Except I have been trying to do that and my illness just gets in the way.

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