Wednesday, 12 March 2008

Women's Network and the HIV Clinic

As you know I want to contact other women with HIV in Cornwall and have not as yet succeeded.

And the time I needed this most was when I first found out I had HIV.
But nothing like that, it seemed, existed!


So I decided to try to start such a network. I already had the support from some I had spoken to at KPS (Kernow Positive Support: http://www.kernowps.co.uk/ )but had not become a volunteer or spoke about it in detail.

So stupidly - it seems - I brought the subject up at my next HIV clinic appointment- last week - thinking that at the very least they would be able to tell me a rough estimate of how many women in Cornwall have HIV.

So I asked my doctor.
She had a student with her. I asked her if she could help me with the rough numbers, or official statistics of women with HIV in Cornwall and if she could tell newly diagnosed women about the forum I had started here: http://hivwomenwest.proboards56.com/index.cgi and that I was trying to form a HIV Women’s Cornwall Peer support network.

I thought she could give me an indication of how many women - here in Cornwall and the clinic - sees with HIV - she said why? very 'suspiciously' and I said obviously - if there is only 2 or 3 of us - and I have no idea how many women with HIV there are in Cornwall - then all I need to do is try to contact them as there would be no point in a wider network.

I also said I thought she could pass the information on about the potential network to new clients
She pulled the 'confidentiality' card - even though I was not in any way asking her, or the clinic, to break anyone’s confidentiality!!

She then went further.
When my husband had gone out of the room - he comes with me to all my appointments to support me just now - and the student had left, she came into the room I was waiting for a blood test and closed the door behind her?

She said something like ' I do not think you should start a network - you are not in a fit state to do this' not the exact words but this was the meaning as I heard it!

I felt/am sure the assumption/worry was I would damage other women rather than concern about my own well being - but I may be misjudging this and she was concerned about me - I hope so – but if so surely it is my place to decide what is ‘right ‘ for me? Not hers?

I was incensed!
And also very crushed and upset – just what I need for my self esteem right now !!

To be fair I know that I have not been an 'easy ' patient, AT ALL! to deal with since I have been there for HIV.

It must have been very difficult for her - I would not want to meet me in that situation as a professional , but I would always do my best and NOT respond as she did. I do not feel she has really understood my situation from my point of view or given me any ' from the gut' empathy - that is all I ask.


Sometimes with people you have to drop just trying to protect yourself and see it- and their situation - as it really is for them! and acknowledge it!!

Cut the professional crap I am a 'professional' too - in my own field!!!

As while I have been VERY 'difficult' at times - just the same I do not think she should have made theses assumptions about my ability to initiate a peer network which would be positive for those involved - and if she did she should have kept them to herself?

This is not how I usually am as a patient. My orthopaedic surgeon Mr Norton who dealt with me for years over my leg will say I am a very cooperative and usually very polite patient – maybe a bit loud and ask for what I need, at times but not angry and was normally polite - but this is very different!!! HIV is very different!!

Partly due to the shame and stigma it carries - whatever way you acquired it.

There is no shame in having cancer or a shattered leg!!!

I have HIV now -not a shattered leg; it is 'somehow'? very different for me.

I have been very angry when I have been to the clinic, and I am sorry if that has made it difficult for her as my doctor - but has she not the 'people experience' to realise that this does not mean this is who I actually am!!

Nor is it a reflection on my abilities to start such a network.

And she should have the skills to understand that my anger while at the clinic is not directed to her, but to the illness itself and that I have to be at an HIV clinic at all!!! That I just do not want to be there – futile I know, but that is how I feel when at that awful HIV clinic!

They really should update the GU building as it being in a 'pre-fab' building, with no additional facilities such as alternative and other therapies and tucked away from the main hospital does not help at all!!

I guess we all feel like lepers- hidden from sight when we have to go there? I would like to see a HIV center at Treliske like the mermaid center

I had only just- a couple of days before - found out Barry had HIV the first time I saw her I had only just realised the impliation was that I would have it too!! And second time I saw her was so shocked and distressed that I actually did have it and did NOT want to be there and have HIV!

Also the second time I saw her was the first time I had been with my husband since he had admitted he had got HIV by being unfaithful to me! We have been together nearly 30 years, and I thought faithfully - so to say this was a 'life changing' shock is an understatement!!!!!

He had been in hospital ever since being diagnosed and had come out of the ward to be with me that day and until then I had only spoken to him on the phone or in a crowded ward.

So in the consultation with her there I said some stuff to him - it just sneaked out I was so angry - things like - if you had just kept it in your trousers we would not be here!!!

My doctor was basing some of her assumptions that I was not a suitable person to try and start this network on this!!

She said she had watched me 'abuse' my husband!!

I told him later and he laughed and said 'is she not in a relationship'! and she might see it differently if her partner had given her HIV and lied to her!

My assumptions are not about her relationship status , but that we just do not gel ...............she is OK with my husband who is just quiet and naturally polite - but she is NOT working class like I/we are and just does not understand that to us this is/was not abuse at all - but a totally understandable response under theses dire circumstances

GOD!!! I wish all doctors did not usually – at least in the UK - have to have money, a conducive lifestyle and home for studying and mostly come from middle class backgrounds to have the privilege of spending all those years training to be a doctor!!!

My ideal HIV consultant right now would be a white or black very working class woman, preferably from London where I was born!! or at least working class with some sort of regional accent and less of the 'plumpness' and and no expectation that 'politeness' is required all situations' .......................... even/especially this one???????????

Then me and my HIV doctor 'may' understand each other. But it is not to be!!

Yet this inappropriate 'politeness' was even expected by my HIV doctor from me, ( and she was not understanding of my lack of it) a woman who is in her mid 50s, sitting in an HIV consultation, who has just found she has HIV from her husband who she has been totally faithful to and is basically SHIT scared and in shock!!


So I realise I may get no help from the clinic for a Cornwall HIV Women's network ?

My fault - if I had known when I first went there that this was how it would pan- out for me as to what direction I would go next with HIV - I might 'might' have buttoned up my lip and given this doctor the sort of patient/doctor response she could cope with - too late now

I told her she was making assumptions and not to patronise me she has no idea of who I am outside the HIV clinic, or what I have done in my life or my skills or experience.

She said she only wanted to help people with HIV!!

That is as may be - but why then did she make such assumptions based on seeing someone in the confines of an HIV clinic only and when they were in great distressed shocked, vulnerable and defensive?

This is not at all helpful and also it is not helpful to just treat my HIV and not see me as a whole and rounded person!!

If she read this I am sure she would feel I was abusing her now!!!

But I expected so much more - yes I was angry but where else could I express how I was feeling in the first few weeks of being diagnosed? I could not even tell many, that I care for, at that time outside the clinic -I had not even had a chance to get a hug from my husband or talk it though with him and go through the range of emotions we had to - the anger and love we needed to do to come to terms with it!

Could she not see that what she sees in an HIV clinic is not who those people are?

That even if everyone else’s reaction is to be very controlled - as often people are in hospitals as they may be under extreme emotional and physical pressure – this does not mean that is who they are and they do not explode outside

Maybe she does not care as long as they do not do it when she is around!!!

In our culture ( British) we are taught 'not to make a fuss!! But my culture or the culture in which I was brought up in my family was different - I never learned 'not to make a fuss' it does not compute with me, when it is my issues I am dealing with .

But that does not mean that when working with other peoples issues - I am not completely capable of keeping my stuff out of it.

She made assumptions and I hated it!!

I cried - should not have but felt so vulnerable and attacked to my very core - not only do I have HIV I am now not capable of the sort of peer support facilitation work I have done all my working life both professionally and voluntarily.

But I did say I would be trying to start this network anyway - that she was wrong ( an basically it was not hers to make such a judgement anyway - but I kept that opinion to myself)

It did not end negatively as I then went to Kernow Positive Support

And they were much more 'positive' about the HIV Woman’s Network
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