Long, angry story ahead story. Ready?
I've posted a few times before about my chronic pain and the fact that I am finding things increasingly difficult. I am currently managing to work full time as a teacher, but my attendance is suffering due to increased pain and withdrawal from pregabalin.
Occ health came out to me last year and recommended that work buy me a special chair, which they did. She also mentioned that I would probably qualify as disabled under equality act. However, that wasn't officially recorded on my records. So today I went to see the County's 'doctor' for an assessment.
I had spoken to my GP who had said that occ health would probably request my medical records, which would show my long history of investigations - MRI, ECG etc - and the fact that I have been an outpatient of pain clinic for a few years and have had steroid injections ect to try to control the 'chronic neuropathic pain' I've been diagnosed with.
This seems irrelevant to the guy I saw today. When I said that I struggle to stand too long or sit too long, and that lying down gives me some relief, he said 'well that's nothing to do with your nerves. That's muscular. You just need to strengthen your muscles up'. I explained that lying down doesn't get rid of the pain entirely - nothing does - but that certain standing / sitting positions just aggravate it. He asked how many times I exercise. I said I do pilates or yoga every week - true - but that on a lot of days I am in too much pain by the end of the day to do an exercise class. He basically said that if I did it every day my pain would go away.
He then asked whether I have seen a psychologist or had counselling. At this point I just felt like he was implying that it's all in my head, and I started to get rally upset. I took a phone number for the counselling service - I had been planning to ask for it at my next pain clinic meeting - but he was suggesting that counselling would be able to stop my pain, whereas all it will actually do is give me support and an outlet to discuss things.
Then we got down to the work side of things. I told him that I am managing to cope most of the time, although I have to lie down during my lunch break to get me through the afternoon. I just wanted a bit more understanding and support from school. He then suggested I go part time. It is something I had considered in the future, but I'm not really in a position to do so straight away (plus y11 leave this week which will mean the next couple of months should be more manageable. He said 'I don't think full time is really an option for you at all'. SO basically he is now writing a report to work to say that I do classify as disabled and he recommends I go part time. I was furious at this point and really upset. He couldn't seem to comprehend why I would be so upset, but I just felt really demeaned, patronised and out of control of my own life. Life leaves me at the mercy of pain all the time as it is, and I felt like he was making decisions about my future based on talking to me for 10 minutes and not seeing my medical records.
The final insult was him saying 'I don't know what else I can do for you when you don't actually have a disagnosis.' I said 'I do have a diagnosis - the pain specialist ive seen for 5 years has diagnosed me with chronic pain syndrome'.
His response? 'THAT'S NOT A DIAGNOSIS, THAT'S JUST WORDS'.
I'm not sure what to do now. I feel like complaining about how he handled it would just make me seem like even more of a crazy, lazy attention seeker than he already thought of me as. But I'm so angry. Pain conditions are so misunderstood, but I feel like he handled the whole thing really badly, and all day I've gotten upset again when ive thought about it.
Luckily I have a very supportive boyfriend who sticks up for me and has said that if I do have to go part time sooner than expected we will manage. Without him I don't know what I'd do.
Anyone care to cheer me up and make me feel a bit less alone and misunderstood?!