Well my long-awaited appointment with the GI specialist was quite disappointing. Getting there set the tones: Elly dropped me off at the hospital and then went to park her car and then join me. She had a run in with full car-parks and an unhelpful parking attendant, by which time I’d staggered to the outpatient clinics in the bowels of the hospital.

En route a couple of nurses asked me if I was ok to get there – I was just about. When I arrived I was told that proceedings were running about 30 minutes late. Another nurse noticed that I was uncomfortable sitting, and offered me an examination bed to lie on, which I gratefully accepted.

The specialist began by asking ‘what is wrong with you?’ (Not ‘how can I help?’ or ‘what is the trouble/symptoms?’) It felt as though he was asking me to diagnose myself. I described my current almost-constant pain and near total fatigue. He flicked through the images from my scans and data from other tests, then said ‘it’s difficult to say what’s happening – all your tests show no issues or abnormalities.’ (Difficult or not, surely diagnosis is his job! And why are his difficulties my problem?)

A mechanical examination of my abdomen, groin and neck (the latter were for swollen lymph nodes) followed, and again added to his difficulties in diagnosing me. He suggested that while there might be nothing ‘mechanically’ wrong, there might be some functional issues – either something not happening that should or something happening that should not. I asked about further tests to check for such things and was told his hunch was that tests would show nothing. (I was confounded by this: diagnoses surely need hard data, not hunches!) I was told that I could have a sygmoscopy test but that an appointment for this might not be until a month hence.

I asked about being opened up so he could have a look to see what is wrong – because there clearly is something very wrong just now. I was told that this wasn’t a way forward, and that I might just need to learn to live with my conditions. I asked how, and we both reiterated that I can’t go on like this – I’m merely existing, and hating every waking moment of it just now. I specifically asked about pain management, hoping for some guidance or ideas of who could teach me to manage pain at least enough to do something constructive.

I desperately want to go back to my academic career. Also, while Elly is on a career-break just now and so has time to do things I can’t, what is to happen when she goes back to work? Is she meant to fit in fetching prescriptions, taking me to medical appointments, basing her life around nursing me ad infinitum? I think not! In any case, our career-breaks were supposed to be about adventuring together, not existing in limbo with occasional excursions to a doctor.

The only response to the pain managment question was that I could discuss with my GP taking stronger pain-killers and increasing laxatives if these cause further constipation. (That’s treating the symptoms, not the cause!) The specialist gave me a form which I thought was a prescription for stronger laxatives, of the same type as used to clear out my bowel when preparing for the colonoscopy. It turns out it wasn’t a prescription but a request for my GP to write one. Ellly has discovered that this won’t be available until tomorrow at the earliest.

I was also given a sample bottle for a stool sample  (to test for foecal calprotectin, a marker for bowel inflammation) and asked to give blood for a test. (We think this is for celiac disease.) As ever, my body didn’t co-operate so it took three attempts to get a sample. By the end of this process I was ready to run screaming. It didn’t hurt at all but being punctured is just so counter-intuitive it triggers a very strong phobia.

In summary, while the appointment wasn’t antagonistic as far as I could tell

• there was no feeling of empathy from the specialist
• nor was there a sense of urgency or determination to help me, despite this having started 4 months ago. The not-an-actual-prescription form seems to typify the lack of urgency. (Why didn’t the specialist explain what it was? Were we meant to read his mind?)
• there was no diagnosis or prospect of moving forward, or even sideways (i.e. learning how to live with what’s happening)
• the only kindness from medical staff was from the nurses, who were full of kindness, compassion and professionalism
• the problem seems to have been thrown back at me, Elly and my GP.

We got home without further problems. Elly produced lunch, phoned my GP and went shopping while I gratefully sank into sleep. I’m now back in pain-limbo. I was able to sit long enough to write half of this before pain reduced me to lying prone in my nest, typing one-handed.

I realise I’m very lucky: I live in the first world, have a caring, capable, determined and generally wonderful parter, and other friends, family and colleagues who care about me. I live in a warm, dry house and am able to communicate electronically. Bureaucracy notwithstanding, I can see a doctor after relatively little wait most week-days and get the medicines I need. But I’m still ill, and now don’t know what to do to begin to reverse this.