On the 31st of January, the Chairperson of the Support Group Alison Morton (that’s me!) will be joining a team of people who all have Fibromyalgia from across the UK to present to MP’s that there is a very real need to get more funding into research to find out what causes Fibromyalgia, a need for more support for people living with Fibromyalgia, a need for more consistent education for all services that are there to support people in times of ill health (for example GP’s, DWP, Councils, Occupational health, employers etc), and for Fibromyalgia to be recognised as the long term condition it is instead of an impairment.
The symptoms of Fibromyalgia have been discussed and noted in medical journals for hundreds of years, yet in 2017 we’re not really much further ahead in knowing what causes this condition and what the best specific treatment is. We know that pain management can help us live with the many symptoms and in some cases can reduce their frequency or intensity, but we still don’t have a cure, or even the resources to provide consistent pain management for everyone throughout the UK. I feel very lucky that I was referred to the Newcastle Pain Management team, but, I know that not everyone is allowed a referral and a lot of people from our support group (and throughout the UK!) are turned away with ‘there’s nothing we can do for you’. It really is a post code lottery for care. Throughout history people living with Fibromyalgia have often been discriminated against, as it’s commonly seen as ‘a women’s problem’ and ‘all in their heads’ (even though we know it affects men, women and children across the world and the latest research shows that it more than likely is caused by a neurological disorder and problems with the central nervous system…so I guess it is ‘all in our heads’…just not in the way that they mean!)
Still, today, people living with Fibromyalgia are discriminated against, laughed out of doctors offices, and told that they’re ‘just stressed’ and denied treatment and medication. This isn’t acceptable. This is a big reason I am so passionate about awareness of Fibromyalgia. At the moment, not all, but some GP’s still don’t believe it’s a real illness. People who have Fibromyalgia commonly have multiple chronic conditions, so denying further care could therefore be creating a much longer wait before proper diagnosis (and we already know that it can be a lengthy diagnosis period to start with due to the nature of ruling out other conditions etc). I have often had discussions about (and personally experienced) the moment someone sees the word Fibromyalgia in medical notes, you can almost see on their faces the stigma attached to the word. As soon as Fibromyalgia is seen all other possible medical conditions are put down to having Fibromyalgia. This is a dangerous culture, and can have dire repercussions.
I’ve been running some online questionnaires about living with Fibromyalgia and also treatment from the DWP, I’ve ran these questionnaires so that we can have some data to show the MP’s in our presentation, we’ve applied for Freedom of Information statistics on Fibromyalgia, but we’ve been told that currently there are no statistics held.
Some of the responses I’ve read through (and I’ve had hundreds of responses from all over the UK) have been absolutely heartbreaking. Overall it shows inconsistent care and support for people living with this illness. Some have had good experiences and have found GP’s who believe them and help them to the best of their ability. But most have had bad experiences, had to change GP’s multiple times just to be heard by a medical professional, been shouted at, laughed at, and sent away with no support. Not surprisingly then, this has lead to a negative impact on people’s mental health.
42% Sometimes 32.1% No 20.4% Yes
We cannot live in a society that treats millions of people this way. This is why I am determined to fight for you all. To get the recognition you deserve, to get the care and support you deserve, and to realise you are not alone and it is not ‘all in your head’.
We may be living with invisible illnesses, but we are visible and your voices will be heard!
The petition for MP’s to discuss this in parliament currently has over 75,000 signatures and needs to hit 100,000 for it to be considered. If you would like to sign it, you can find it here: PETITION LINK