Tuesday 7 August 2012

As most of you know, I went to see a specialist on Friday for my ME

This was my first appointment and I went in with an open mind and to take everything with a pinch of salt. 

When I went in, she was pissed that I didn't fill in a certain bit of the questionnaire and 'it was going to take longer'. She wasn't happy and was abrupt and made me think right back to when I was 11 and symptoms started. 

She didn't follow a pattern of events, just kept jumping from one thing to another and writing notes. She then proceeded to ask me random questions one after another, not explaining why she was asking them.
She asked me about my love life, my history (if I had ever been sexually or physically abused), about my periods, when EXACTLY I had the last one, about my social life, alcohol and smoking etc. I can see why she asked some of these, but it would of been nice to of gone into detail as to why she was asking these things. 

She carried on firing questions at me one after another instead of constructing a conversation with me. This was VERY draining and got me very confused and dazed. I answered one question (unsure of what she actually meant) Then later in the appointment she said that I manage to do everything - I'm sorry but how can I manage well when I can either do something during the day OR at night. Everyone else my ages is getting up - going out during the day, then at night, then getting up the next morning and doing something again, that is NOT me. 
She then said it was to do with personalities, of which I also do not agree. My personality is bubbly and positive and if it was up to me I would be out and about exploring new places and doing SO much more than I am at the moment, i'd be travelling and really going for it. But my body doesn't let me, therefore I am limited = NOT LIKE EVERYONE ELSE (those without illness)
Anyway, because I answered a question in the incorrect way (in regards to my illness) she then got mad and referred back to my answer, I explained that it was hard for me to answer when she was firing question at me and that I had misunderstood, therefore answered wrong.
She didn't then ask me to re-explain this to get more info, she just said 'well you said this' - yes I did, but doesn't mean it was right. If she had asked me questions and constructed a convo with me rather than asking me to generate percentages etc then I wouldn't of got as worked up as I did. 

Anyway, she said the CBT word; said that I was stressed and anxious - leading to my CFS flare up, I said fair enough to the stressed bit (lately anyway) but I haven't been stressed for the last few years - I DO NOT believe that stress leads to CFS, a flare up maybe but I can wake up and be in the most positive of moods and STILL FEEL SHIT! So that isn't stress, like on Christmas - a stress free time, I still feel ill. A flare up can be caused by stress, I get that - but I'm not a stressful person and I am still suffering.
I am NOT going to CBT - not ever, and that is a promise. 

She also started talking about my other problems (asthma, excema, vitamin levels etc) as their own thing and saying what to do with them - not linking in with CFS. I see separate specialists for those things, she needed to stay on track with what I was there for. She didn't ask me if I had any questions or if I wanted to say anything, she was rude, abrupt and quite frankly did not want to talk to me.

She then prodded me for a bit in my painful areas and decided that I have Fibromyalgia too .. she didn't explain anything to do with this or its symptoms. When I got overwhelmed and frustrated by this she said 'I don't see why you're frustrated Charlotte' and carried on babbling about a load of shit. She didn't stop or ask me to explain why I was so upset. 

I'm fed up of having to justify to everyone how I feel and have to talk about it all, they keep labeling me with all these things and not explaining to me - or helping me. 
I have been managing just fine ON MY OWN. I have control and I pace - meaning that I mostly do everything I want. I will not feel bad that I do that, I know most people with the same thing as me can't do what I do, and that's awful - but just because I can, doesn't mean I'm suffering any less or in any pain.
Apart from what I do, I do not have a life - I don't have a social life and i'm in bed every night by 9pm. These are sacrifices I have made for myself, ones that people who aren't ill don't have to make. 
This is me and I am the one that has to deal with this, there will be people who will understand - but at the same time, everyone is different - therefore we are technically all alone with our illnesses and what it does to us. 

The appointment ended with me being silent due to being in such tears and mum rounding up the convo with her, she didn't stop and be kind to me or anything, just said 'yeah we are done' and goodbye. I then walked out to the car in tears and broke down completely.

I am not an angry person - neither do I get upset about things that badly, very often. But that appointment made me completely drained, low and very angry. Two of which feelings I do not like feeling - or feel very often. 
That day I quite definitely felt the worst I have done in ages. They completely disregarded my illnesses, nothing positive came out from it and neither was told where to go from here. Pointless, useless and draining. I'm no further than I was before. 

2 comments:

  1. I'm so sorry you had such an awful appointment! That sounds completely demoralizing and awful. I also have ME, and I'd been seeing a doctor I started off liking who had sent me to every specialist possible to rule everything else out. After months and months of ruling things out, she decided I was depressed and anxious. NO, I am not. I have been clinically depressed at other times in my life and I know what that feels like. This is a DIFFERENT beast.

    It makes me so angry that we all have to go through all this; the disbelief, the judgment, the lack of caring, the wanting to write us off and not hear or help us. I'm sorry you had to go through that :(

    ReplyDelete
  2. Sounds like this "ME specialist" shouldn't be a doctor or working in healthcare at all, sorry you had such an awful experience. You'll get there, without her stupid "help". It angers me that this awful situation of dreadful treatment is set up and encouraged by our governments and authorities with their full blessing :(

    ReplyDelete