Recognition of Fibromyalgia as a Disability

Andrea Jenkyns Excerpts

Tuesday 15th January 2019 Westminster Hall

[Andrea Jenkyns (Morley and Outwood) (Con)]

It is a pleasure to serve under your chairmanship, Mr Bailey.

I cannot remember a day without pain in more than 15 years. When I was first diagnosed with fibromyalgia, it was less understood than it is today. We have come on in leaps and bounds. Fifteen years ago, it was felt to be very much a condition in someone’s head, but it is much more widely understood today, so we are moving in the right direction. I thank the hon. Member for Chesterfield (Toby Perkins) for securing the debate, which is important not only to raise awareness but to ensure that we get more research in this area.

I shall speak briefly about what it is like, on a daily basis, to live with this condition and then say a little about the current legislation and what I think could be done to help sufferers a lot more. The hon. Gentleman discussed some of the symptoms. The widespread pain is one of the worst things. I am talking about waking up in the morning and being bent over with pain. You feel like you are 80 because every muscle in your body is in pain, and that continues throughout the day. I have found that the medication provided really zonks me out. It causes me to have even more memory lapses, which in our profession is not good. You do not want to be feeling sleepy all the time.

It is a good job that I have kept my sense of humour about this. I remember one occasion back in 2015, when I was newly elected and a guest on one of the political programmes. Even to this day—three years on from being elected—I get very nervous when I know that I have to speak in a debate or do a media appearance, because I never know when the fibro-fog is going to come on. I remember that during that political programme, I could not think of a word as basic as “economy”, and what other word is there for economy? I do not know whether anybody else can think of one. So I was there, with the cameras on me, and I just wanted the ground to open up and swallow me, but I just laughed it off and dealt with it.

On another occasion, I was at a supermarket, unloading everything at the till—I had a whole week’s worth of shopping and baby stuff—and I completely forgot my PIN. The way I have dealt with that problem since is that, just as in “Who Wants to be a Millionaire?” you can phone a friend, I phone my mum, when I have that memory lapse, to remind me of my PINs.

Joking aside, the lack of sleep is an issue as well. Last night I had three hours’ sleep, and that is a regular occurrence. But I feel very lucky. My sister has multiple sclerosis. She is only 10 years older than me and is blind in one eye and losing the sight in her other eye, but she is a real trooper and runs her own business. I do think that the way we approach things in life can help. I am very lucky, in that I do not suffer with the depression side of fibromyalgia, and I think that is a real crux of it, so I would like to ask for more support for the depression elements of it. What I find is that each day is a struggle. I just keep focused and keep busy; I am probably living off adrenaline. When you get home in the evening, you collapse into bed and then, when you stop blocking it out, you realise what pain you were in. Then there is that vicious circle of lack of sleep and the cycle begins again. The fibro-fog, extreme tiredness, extreme pain and trouble remembering things are the big things for me.

Trauma can bring the condition on. I think that when I lost my dad, that made the situation worse. As the hon. Member for Chesterfield rightly said, stress can make things much worse. I had a constituent who lost two young babies to cancer. That is how her condition was brought on, and she has struggled since.

I shall wrap up by saying this. There is provision under the Equality Act 2010, but it is on a case-by-basis. I think that is right, because everybody is different, but we need to ensure that fibromyalgia is more recognised and that there is greater support, better medication, which does not zone people out, and better support for depression. Also, the physical treatment is not just about physiotherapy; deep tissue massage is brilliant, but people cannot get that on the NHS. Could my hon. Friend the Minister look at such things, please?

[Several hon. Members rose—]