"I am just looking for answers"

About: Western General Hospital / Rheumatology

(as the patient),

I have suffered with symptoms that have progressively gotten worse over the past 10 years. I was diagnosed with fibromyalgia 3 years ago, I think, but having done everything right I am still getting progressively worse so looked to see if it could be something else. I had a blood test which was positive for ANA and so was referred to rheumatology.

I want to give feedback on a recent appointment I had with the rheumatologists. I feel that having received and read the letter that was sent  to my doctor that some unfair and uninformed judgements were made regarding my mental health and therefore, quite frankly, I do not put much trust in the rest of the judgements.

Upon entering the appointment I was told repeatedly that I ‘did not want Lupus’, off the bat this made me feel like I was being treated like I was an idiot, and like I was someone chasing a diagnosis for other reasons. As a young person with chronic symptoms I have spent the last ten years getting this attitude from doctors, specialists, employers. It is not new to me but it still hurts. Of course I do not want Lupus! I also do not want to have any of the symptoms I am here to see you for. To suggest I want a debilitating condition is absurd, I am here because I want to figure out what is going on so that I can access the help I need to live a normal life. 

Getting to an appointment and attending one takes a lot out of me emotionally and physically and I do not feel this was appreciated at all. I suffer badly from brain fog and confusion so may ramble on a little to try and find my point which seemed to be annoying. 

When being physically examined for the symptoms I had described I was told they couldn’t find anything that wrong with me, apart from my general base line pain which is every day for me. My mobility was ok and my hand swelling had gone down a couple days before. I said it was sod’s law that the days I actually get appointments I’m feeling ok and the reply was that the blood tests are the only thing that will determine if I have an immune disorder or not anyway. 

When I asked about other options for investigation, they did not want to discuss this and wanted to stick to the fibromyalgia diagnosis. I explained it had not been made clear to me why I was coming to this appointment in the first place so where else could I go from here, what other referrals could I have if rheumatology was only about immune disorders (in their own words). I was told I should do more exercise and I explained I had been doing all the right things since I had been diagnosed and actually was an incredibly active person beforehand and I have only been getting worse.

I think I had burst into tears at this point, I’m not proud of that but my cup was now full. I was having flashbacks of every other doctor’s appointment where I had been made to feel lazy and worthless. 

I then heard the phrase that all chronic symptom sufferers know too well and that suggests the doctor’s patience has now run out: ‘What do YOU want us to do?’ I took this as my cue to leave; I apologized for taking up time and left politely although broken.

Upon receiving the letter to my doctor about the appointment, it had been surmised that if I received counselling for a sexual assault that I experienced round about the same time my symptoms started appearing that it would help me recover from Fibromyalgia and with my depression. 

I had been asked about my mental health at the start of the appointment and I had said I had chronic depression, I was also asked me if anything had happened around about when my symptoms started and I spoke about the sexual assault. Apart from being told I was ‘not over’ the assault and this was the reason why I had Fibro and asking if I had considered counselling (I had and have done a lot of it), this is the extent of our discussion on my mental health. 

My first concern is the fact that this is not a psychologist and why they think they are able to tell me that I am ‘not over’ this event is beyond me. As someone who has lived it, spoken to many a therapist and also other survivors I can tell you now: You are never truly ‘over it’. We have coping mechanisms and we talk about it and we meditate. I know what PTSD is and I know how it affects me. I also know I have a way to go with my PTSD but it is in hand and to be honest, not their concern.

My other concern is that my claim that I have chronic depression was completely dismissed in surmising as just ‘not being over’ my PTSD. I have suffered depression since I were a child. I was not asked to back my claim up, judgements were made as to what I really meant. I have chronic depression and by the time I was assaulted at the age of 18 I had already permanently scarred myself with self-harm and been on an unofficial (as in not in an institute, at home under the guard of my parents) suicide watch. I feel like this would be essential information in order to make a judgement over my mental state. I take medication every day because I have intrusive thoughts that no amount of meditation can help. I have accepted that my brain is wired differently and I use medication and mindfulness and the support of my friends and family to ensure I do not spiral again.

I do apologise for the length of this however I wanted to try my best to portray the situation and how it made me feel. I am not only unhappy with the assessment but also feel that a refresher in dealing with chronic pain patients might be helpful as well as staff reading the full medical history to get a better understanding before making snap judgements.

I do not hold out much hope for a resolution and I do not know if I have the strength to ask for a second opinion at this time. I feel at this appointment they managed to completely invalidate mental health disorders and the struggle of fibromyalgia sufferers in one fell swoop.

I don't mind if it is not an auto immune disorder, it can be a tick off the list on my journey to figuring out what's going on.

I have to reiterate to people like this all the time that I'm not a hypochondriac and I am just looking for answers, why can't they treat me decently and understand I am going to do all I can to know my condition fully instead of just giving up?


Response from Catriona Rostron, Associate Nurse Director, Western General Hospital, NHS Lothian

Dear Cha1cha2cha3

I am sorry that this is how you feel about your experience. This is not the way in which we wish our patients to be treated.

I would be very grateful if you would contact our Patient Experience Team at Feedback@nhslothian.scot.nhs.uk in order that we can investigate your concerns and expedite a 2nd opinion if that is what you would wish us to do.

Catriona Rostron

Nurse Director, Western General Hospital.

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Response from Jeannette Morrison, Head of Patient Experience, NHS Lothian

Dear Cha1cha2cha3

Thank you for sharing your feedback with us and like Catriona, I am very sorry that you are feeling this way following your hospital appointment.

If you feel able and have not already done so, I would be grateful if you can please contact the Patient Experience Team (feedback@nhslothian.scot.nhs.uk or 0131 536 3370) who can try to help.

With best wishes


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