Recognition of Fibromyalgia as a Disability

Tonia Antoniazzi Excerpts

Tuesday 15th January 2019 Westminster Hall

[Justin Madders]

That is exactly the experience that we have had and so many other hon. Members’ constituents have had. Speaking about how she felt before she got her diagnosis, my wife said:

“Sometimes, just having a bath would wear me out. I spent most weekends in bed or on the sofa…I just had no energy to move. I couldn’t do stuff with my children or even cook dinner. And I couldn’t understand why I felt like this. I knew other people got tired, but they still managed to live their lives. And so I thought I must just be lazy or completely lacking in any self-control…So when I was finally given my diagnosis, I was pleased that it wasn’t just me making it all up. It was not all in my head or character flaws leading to laziness and ill-discipline. I was and am actually ill. This is something beyond my control. And although it might be unfortunate, at least I now knew what it was.”

I was relieved as well. I knew that something was wrong, but I did not know what. On reflection, I think we both realised that she probably had the condition for years and all the time it was getting worse. We knew something was wrong, but we felt that nobody was listening.

[Tonia Antoniazzi (Gower) (Lab)]

The most shocking thing about fibromyalgia is that it mostly affects women—seven women to one man. My constituent came to visit me on Sunday at a surgery and she has just emailed me now to say that after that five-minute meeting it has taken her until today to recover. Does my hon. Friend agree that we cannot continue to ignore this?

[Justin Madders]

That is certainly something I recognise. My wife tries to live by pacing herself. That is the only way she can manage her condition. She knows it is a lot worse in winter than in summer and it will flare up if she over-exerts herself. She can save energy for specific occasions, for example a conference, work or an evening out, but no matter how much she plans, it can catch her out. She will be too exhausted or in too much pain to meet a deadline or go to a meeting. She ends up giving her apologies and feels that she is unreliable. She has practically given up trying to plan social things in advance. It is incredibly frustrating.

Unless more research can be done into this condition and more awareness raised among the medical profession and employers, fibromyalgia suffers will continue to be disadvantaged by more than just their symptoms. For us, this is not just about how fibromyalgia is classified under the Equality Act 2010, but, in common with many recurring and fluctuating conditions, about how people with these conditions are treated and supported. There needs to be much more research into the condition alongside consistent treatment pathways, with better training for medical professionals to recognise and then treat the symptoms.

Services should be in place to support fibromyalgia sufferers to enable them to live their lives as fully as possible. It has taken my wife two years, at her insistence, to be referred to a pain management clinic. A year on, she is still waiting to be seen. All the time she is suffering and her condition is deteriorating. I hate what this condition has done to my wife and our family. It is so frustrating not being able to help her make the pain go away, not being able to help her find a way for her to live her life as she should. It is so frustrating that there appears to be no hope on the horizon that things will get any better soon.