The Pain of Diagnosis

So yesterday I went to the rheumatology department at St. Peter's Hospital in Chertsey, Surrey. The receptionist and the nurse were both friendly and helpful and everyone I had met at the hospital was eager to help. I was even ready to let the fact that they had lost my referral letter for around 3 weeks slide in the face of such helpfulness.

On my first visit I saw a doctor who told me her name was Dr. Lin. She was as good as the system could allow for, taking me seriously and ordering a multitude of tests. She understood the importance of a diagnosis for accessing support from my university and from the welfare system. I left the appointment pleased and hoping to see her in my follow-up appointment where I would hopefully get this all-important diagnosis. The wait was 8 weeks but such is the NHS.

It all went a little downhill though at my follow-up appointment. The staff were again thoroughly friendly and helpful until I reached the rheumatologist. From the off, it was obvious that the Dr. Williams I saw had no clue about CFS/ME and seemed to feel that I would be happier with a vague diagnosis that provided no cure or treatment than something that would. (You know things are bad when you would actually prefer it to be lupus).

He did give me a diagnosis, but this was a semi-diagnosis. He called it 'a chronic fatigue syndrome' with the emphases on the 'a' and the 'syndrome'. He made it clear that he had no idea what was wrong and that this was a name that was used to just bundle me in with all the other misfits of the NHS. My relief on getting a diagnosis was lessened quite a lot by this.

My list of questions that I was hoping to get at least some kind of answer to were met with a mixture of 'I don't know's and answers that came only from the rheumatologist's imagination. I even had to correct him on a couple of points. He suggested that my brain was imagining that my symptoms were worse than they actually were and yet quailed under my further questions.

I did not trust a word he had said. I left the appointment in tears upon realisation that I knew more about my illness than the 'specialist' did.

My GP had ironically sent me to someone 'more specialised' to diagnose me and I had ended up being diagnosed by someone with even less knowledge than her.

In what system is this acceptable?? I have been given a damning diagnosis without any compassion from a doctor who had no idea what he was doing. He offered no treatment or help despite Dr. Lin having promised me some. Dr. Williams had not even heard of CFS clinics. No further investigation was carried out and no referral to someone who may have more knowledge was made.


I am appalled by how things turned out yesterday and I know for a fact that my experiences are not uncommon. I think that this is partly due to the lack of proper research but also due to the lack of empathy, interest or honesty from a health 'professional' who spent most of the appointment giving me (in his own words) "politician's answers" - i.e. answers that were a load of rubbish and didn't actually mean anything.

Badly done, NHS, badly done!