Recognition of Fibromyalgia as a Disability

Alex Sobel Excerpts

Tuesday 15th January 2019 Westminster Hall

[Justin Madders (Ellesmere Port and Neston) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Bailey. I congratulate my hon. Friend the Member for Chesterfield (Toby Perkins) on securing this debate.

I have an interest to declare: my wife is a fibromyalgia sufferer. I want to talk primarily about her experience of the condition. Perhaps the hardest symptoms to understand are the ones that we cannot see. The fatigue literally wipes her out for days at a time. There is also the pain: to the outside world she looks okay, but underneath she is suffering. In her own words, she said:

“I do experience various aches and pains. These can differ from aching muscles to painful joints, especially knees and ankles; tenderness all over my skin like I’m covered in a thousand small but painful bruises; and sometimes it feels as if every bone in my body is burning.”

Of course, I just want to give her a hug, but doing that makes her wince. It is so frustrating knowing that I cannot help.

My wife considers the cognitive challenges—the “brain fog”, as she calls it—the most irritating symptom. She also said:

“Sleeping does not come easily. It is very difficult to get to sleep and when I fall asleep, I wake up within minutes.”

There is not enough time to go through all the symptoms, but we have heard about many of them today. The biggest thing I would like the Government to take away from today is the experience we had in getting diagnosis and treatment. My wife said:

“When I was first diagnosed with fibromyalgia, three years ago, I was actually quite relieved…I knew things were getting worse. Despite numerous tests, there seemed to be nothing wrong with me.

I recall multiple visits to my doctors where I would tell them how exhausted I felt and they told me that I was probably depressed—that being a working mum with three kids was tiring and difficult.”

Hearing that just made her despair.

[Alex Sobel (Leeds North West) (Lab/Co-op)]

On that point, my constituent James wrote to me saying that a lot of medical professionals look at him as if the condition does not exist, and that the worst part is that nobody understands it and it is not recognised. He got zero support. He suffers from physical depression. The antidepressants do not work and he cannot get the support or the treatment that he needs from the NHS.

[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.