Guest post by Ruth Fryman
I just knew I had fibromyalgia when I went to see my then-GP, because of all the symptoms I was experiencing: pain in every muscle, ligament and tendon from head to toe; burning in my muscles; strange electric shocks; fatigue; poor sleep, brain fog, and a host of other symptoms. But I was met with prejudgment and bias as a woman with a long mental health history.
Before I tell you how the conversation with the GP went, I’ll tell you some background history to set the scene.
I had always suffered from mental health issues. I think I was born anxious. By the time I was three I was terrified of the dark, dogs and hospitals. In 1972 my grandfather died. He was very old and had been ill for years. I was nearly ten. I’d always had a lively imagination and suddenly realised that I was going to die one day too. I wondered what it was like. I became quite obsessed with wondering what being dead was like, and used to hold my breath in bed to try to imagine it.
When I was 12 I started getting what I now know were severe panic attacks. All I knew at the time was that I’d get episodes where I couldn’t breathe. I felt terrified, I was dizzy and restless, hot and cold. At the same time I developed a dry hacking cough. It became so bad, and I was such a nervous wreck, that I was hospitalised in 1975 on a dreadful children’s ward. The cough turned out to be psychosomatic and a child psychiatrist deduced that I’d developed a death phobia. His treatment was: “everybody dies, so go and get on with your life’.
I spent the rest of my years having panic attacks and several breakdowns. I had to stop working because of my panic disorder. I then started to develop periods of depression. I also started to develop symptoms of ME and fibromyalgia – which, at the time, I put down to side effects of my mental health issues.
In October 2003 I became seriously ill with a severe clinical depression. I was self-harming and suicidal. At this point my GP was great and very supportive. But I was also suffering physically. My muscles ached and burned, I had no strength and could hardly walk. I was very sensitive to light and sound, and I slept 18 hours a day. I felt totally washed out.
As I began to mentally recover, my body didn’t. I was under the care of a Community Psychiatric Nurse who encouraged me in 2005 to see my GP – she knew people with depression got aching muscles and tiredness, but she’d never heard of anyone having burning muscles before.
I already knew about fibromyalgia as my cousin’s wife had it, and my Mum had experienced polymyalgia – a similar condition, which has the same symptoms but is caused by inflammation and is curable. So off I went to see my so far supportive GP.
Now I’ll admit there had been the odd time when I’d presented to the surgery with anxiety about a symptom, but I wasn’t in there every week and certainly wasn’t a hypochondriac. I’d researched fibromyalgia and typed a list of all my symptoms for my GP. When I presented the list to him his reaction was: “Its surprising what the mind can make the body think it’s got.”
I was astonished. I’m usually useless at asserting myself, but this time I was so angry that I said, politely: “I can’t believe you’ve just said that! Is that what you think – mental health patient, what’s she given herself this time?!” He’d totally prejudged me. My notes say somatic illness aged 12, I’ve a lifetime history of panic disorder; I must be making it all up! He blustered when I challenged him, and said he’d refer me to a Rheumatologist to “prove that there was nothing wrong” with me.
That first Rheumatology appointment was a disaster. I was examined by the consultant’s physiotherapist, who didn’t do the pressure point testing for fibromyalgia properly (you have to press the sore bits on the body until your nail goes white). She said I had tendonitis, caused by my antidepressants.
Physically I got worse and worse – but, having been dismissed so many times, I’d also become convinced that I was doing it to myself psychologically so I wouldn’t have to face the world. My mobility was deteriorating by this time and I used a walking stick. I remember the GP’s face when he first saw me using it. I felt his thoughts and prejudice: “Oh she’s trying it on to get attention!”
In 2006 a wonderful psychologist, who I was seeing for CBT for the depression, came to my rescue and convinced me to seek a second opinion as he believed my constant pain and exhaustion were real. I arranged to see a Rheumatologist privately and was diagnosed in November 2006. I was fuming when I read the GP’s referral letter, which referred to my ‘psychosomatic symptoms’, but luckily the Rheumatologist examined me and confirmed: “You have fibromyalgia.”
After this consultation, I went back to my GP to ask for adequate pain relief. My pain was so severe by now that I was taking my mum’s strong cocodamol tablets. He said: “I’m not giving you anything with codeine in. Just take paracetamol. IT’S NOT SERIOUS YOU KNOW.” Yes, I know its not cancer, and its not degenerative like multiple sclerosis, but this was ruining mine and my family’s lives.
I was disgusted with him frankly. He’d just looked at me and gone: “Middle aged woman, mental health patient, invented syndrome”, and dismissed me. I never saw him in the practice again. Instead, I saw a sympathetic GP who gave me the pain relief I needed, along with a referral to a pain clinic and wheelchair services.
I’m only sorry I was in no fit state to formally complain about that first GP. He now teaches medical students. I dread to think what he’s teaching them about ‘hysterical’ women. Sadly this kind of reaction is still all too common with hidden illnesses that are mostly suffered by women.