Nobody, not even the doctors, would believe the pain felt by Eden Hansen who has a form of rheumatism
Receiving the diagnosis of fibromyalgia, a type of rheumatism which affects the muscles and ligaments but not the joints, made sense of everything I had already researched for myself. For seconds it brought relief, until the consultant rheumatologist said there was nothing that could be done. This was not what I had read, and after many years of battling severe mental health problems, I was not about to accept what he had said.
Things went downhill from there as I fought to see other specialists who disbelieved the degree of pain I was. Most despairing and infuriating was that I had come through so much and worked so hard at my recovery from a personality disorder, major depression and eating issues.
Now, finding myself in almost constant, severe pain, one doctor implied that I was making it up and it was just another symptom of emotional pain. I was humiliated at the pain clinic for 40 minutes by two doctors after waiting six months to be seen there. One told me I needed a psychiatrist, not painkillers. He suggested I come off medication (including sleeping tablets) that had been carefully monitored for years by a consultant psychiatrist. I spoke up for myself as much as I could, but felt vulnerable and was inconsolable while on the phone to a friend when I left the room. I heard one doctor joke to the other that they “deserved a cup of tea” after seeing me.
The experience of many people with fibromyalgia seems to be they are dismissed, disbelieved and even ridiculed. They are told they don’t have a real illness. I have heard similar comments in a support group I attended. I was being put down because of my history of mental health issues. As a qualified counsellor and former mental health service user, I understand the connection between mind, body and pain. But the level of my pain was real whatever its connection to my body and mind.
Eventually I met a consultant specialising in fibromyalgia who did believe me. He explained what I already thought, that many of the other physical health problems I had were all related to the fibromyalgia. These had been treated as separate problems since I was younger, and no one ever mentioned the possibility that there could be a connection. It was no wonder my mental health had once again deteriorated when I was living with constant pain and working full time as a counsellor.
All this has led to my re-referral to mental health services. Like other people who are survivors of psychological or physical trauma, being believed made a huge difference to me.
The consultant rheumatologist started me on new medication, which seems to be having positive results. All types of pain, including emotional and physical, wear people down. It helps when health and social care professionals show empathy, respect and validation.
Eden Hansen (not her real name) is a former mental health service user and a counsellor