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It’s A-Level Results Day!...Now what? By Daisy B

As I sit here and write this with a literal black cloud hanging over Southampton, I remember how much nicer my own Results Day was this time last year. The sun was shining, I went for a cheeky celebration drink with my friends; all was sunshine and rainbows and unicorns because: we’d done it! We’d gotten through the most stressful two years of our lives (so far), we’d gotten our results!

We were going to University!

Now, wait. University. Wow. That’s such a big step. I need to clear out my room, decide what I’m taking. Do I take the teddy bear pyjamas, or will my new flatmates laugh at me? Do I need my stuffed animals anymore? Is my halls room sorted, do I have to find a house, what do you even need to run a house?

The list of questions goes on.

When Results Day is over and people wake up after the celebration festivities, with or without a dreaded hangover, and suddenly realise they’ve only got a couple of weeks to get themselves sorted to supposedly move out, leave home and become a “proper adult” panicked thoughts and anxiety will probably be the order of the day. It’s a scary and daunting thought, and I know it caused me more than just a little bit of stress, whether you’re dealing with normal stress, or with the added thoughts about the various illnesses and problems you have to consider for your day-to-day life.

This stress becomes much worse for everyone if you didn’t get the results that you were looking for and were unable to get into that coveted first-choice university. Going through UCAS, everyone has an insurance choice – but what happens if you had a bad week during exams and even that has become out of reach? The one word that for some reason will have students all over the country flinching and stressing.

Clearing. It seems like it’s a big deal, but I can promise everyone that it isn’t. No employer in the future when, with degree and any other qualifications in hand, you walk into that interview will say “Oh, I see you got into (insert city here) University through Clearing. I’m afraid we don’t want you.”

That’s just not something that will realistically happen.

It’s as though Clearing has become this horror story for aspiring university students, when in reality it’s just another process by which you get placed at a university on the course you always wanted to do. The way I see it, university is university is university – meaning a place where you will be asked to do lots of work, where you will go to more parties than you’ve been to in your life so far, and where you will likely meet the people who will be your friends for life.

Isn’t it possible that you may have gotten to your first choice and despised your housemates, hated your teachers and been a miserable bugger for the rest of the year? There’s always going to be a silver lining, and the one to Clearing is that you’ll end up somewhere totally unexpected, and with the unexpected always comes something shiny and exciting and potentially disastrous – but hey, we’re young, what can you do?

Wherever you end up is the place that you were meant to be. Don’t worry about it, embrace it.

And just between us?

You’re going to love it!

Yes, Kids Can Get It Too

I'm going to be honest, I’m awful at writing about myself. I find it awkward and I’m never sure if I’m too whiny, or if it comes across that I’m trying too hard to be light-hearted and just ends up sounding absolutely miserable as a result. I am a worrier by nature, so I of course panicked when I was told that I had developed a disease.

The title is an attempt at being witty about the fact I have JIA, or Juvenile Idiopathic Arthritis. As the name suggests, it comes on when you’re young and tends to stick around for the foreseeable future unless you’re very lucky. I was lucky with finding the right medication to help me out and have a vaguely normal life, if the life of any student can be classified as such.

It started at 13 and, naturally, I (the least athletic person you’ll ever meet) was over the moon at the prospect of having an excuse not to do PE. Hospital appointments let me miss dreaded lessons like maths and science. I was a lot less happy later on when I had to take my GCSEs, but at the time it was all great.

The difficult part was explaining to people why I had to do these things. The title I’ve picked is a response I’ve had to give to many people over time who’ve asked me if arthritis was meant to be “just for old people”. Well, obviously not if I’m standing here telling you I’ve been diagnosed with it. To find another person with JIA is so hard you barely believe there is anyone else and that on your next doctor’s visit they’ll tell you they were wrong and you pain is easily fixable with an operation of some description. Sadly, not the case.

It becomes quite stressful really, as the disease makes its way through your bones and latches onto the joints you actually need. In my case, my shoulder, elbow, knees, ankles and jaw. Thankfully for my aspirations to be a writer, my hands have been spared so far. Being tried on medication after medication while trying to explain to your friends in a disappointed msn message (yeah, remember that?) that you can’t go out because your medication is making you sick or you’re in too much pain can be genuinely awful. I constantly heard from family “Oh, you’re doing so well” and “I can’t believe you’re coping” until I turned up to my grandparents’ house in tears because of the pain it took to walk for 20 minutes. The difficulty comes in explaining just how bad it can get to someone who has probably never experienced that level of daily discomfort.

I recognise now, though, that if I’d sat down with various members of my family and really explained what it felt like, they might have been a bit more sympathetic and stopped telling me to “just go and get on with it”. Anyone who has felt the way I have knows that it just isn’t possible the majority of the time.

It’s really damned painful.

It’s ridiculously uncomfortable.

And I wish I’d realised it’s okay to feel like that.

However, it’s not all doom and gloom. Personally the older you get, the closer you are to being an adult and the faster you just accept what’s happening to your bones, the easier it is to make your life feel normal. I went to Reading Festival when I was sixteen and had the time of my life, though it led to a few days spent sat down. I like wandering around town with my friends and going out drinking and living like teenagers are supposed to, even if I have to take rest days afterwards. For all intents and purposes, unless it becomes a real issue, nobody needs to know that I have “that disease for old people”.

I have to admit, if you’d asked me a year, year and a half a go if I thought I’d be able to cope with moving out and living alone, taking care of my own medication and judging for myself if I’m well enough to go to lectures or not, I probably would have told you to leave me alone in not so polite a way. I’m still fairly shocked. Don’t get me wrong, living on the 10th floor of Halls when the fire alarm goes off (that’s twenty flights of stairs) made me realise why some people might resort to murder. However, I’m quite happy with life as it is.

It's Juvenile Idiopathic Arthritis #JIA awareness month! Find out about a new service for people with #JIA in the UK http://thndr.it/1sUQEqa

I'm speaking out for the half million disabled people who will lose independence under the new #PIP benefit #20mrule http://thndr.it/1mh4BLt

My Invisible Disease by NRAS CEO, Ailsa Bosworth

Having just read the blogs of everyone who has written for us this week, our second RA Awareness Week, I can identify with everything they have said. The daft things people say, including ‘are you better now?’ and particularly the disabled parking bay issue. I too have faked a limp when I’m having a good day to indicate to onlookers that I really am disabled! I was diagnosed when I was 30/31 (more than 30 years ago!) and things were very different then. The treatment I received for the first 3 years into aggressive disease was pain killers and non-steroidal anti-inflammatories. Even after I had my first operation when my daughter was 9 months old, the treatment didn’t change. Eventually I was put onto steroids which made a huge difference but 20 years on steroids is not good and leaves you damaged, even at what the health professionals term a ‘low dose’.

Like every one with this disease I went through a bereavement, learning to live without being able to do things I loved and had always done, like going for long walks, riding a bike or a horse, water skiing on holiday which I really got quite good at, playing tennis, dancing and being able to run and jump.

Gradually I had to change my wardrobe, no longer could I wear heels, knee length dresses, it was trousers and clogs for me as my ankle started to turn over. All these changes were excruciatingly difficult for me but they were invisible to everyone else. It wasn’t just the physical symptoms of pain and fatigue which people didn’t see or understand, it was the aching loss of ‘me’ as I saw myself. If I caught sight of my reflection as I walked past a shop window, I didn’t recognise the reflection, it wasn’t how I saw myself in my mind.

However, I gradually came to terms with a different future. I’ve always been able to remain working, despite 19 operations so far. When I was first diagnosed and in those early years I worked for a boss who believed in me and whatever I needed to do in terms of taking time off for hospital appointments, surgery, etc. he had no problem with. I worked incredibly hard to compensate, as I know people with a condition like RA frequently do, however, it made life less stressful knowing I had his support. I’ve pretty much been my own boss in jobs since then and that makes a big difference – you work harder!

Little did I know just how much my life would change when, in my early fifties, I took the decision to start NRAS. This has been my dream job – I love it – and the last 13/14 years have been an incredible journey. I’ve met amazing people, learnt a huge amount about RA and rheumatology (which I wish I had known when I was first diagnosed!) and been hugely humbled by the courage and determination I have seen in so many people with RA I have had the pleasure to meet around the UK during this time. NRAS has grown from me and a blank sheet of paper to 27 staff and an international reputation for an organisation who have achieved much in the field of RA since our launch in 2001. My hope is that we continue to grow and evolve and provide everyone affected by this brutal disease with the support and information they need to make the most of their lives because with the treatment and drugs available today, it’s possible to lead a pretty normal life with RA which is why making RA visible is SO IMPORTANT. Our brilliant team have done a fantastic job this week of reaching new audiences and raising awareness – (well done guys!).

Let’s keep it up, spread the word, make RA visible - www.nras.org.uk/RAweek Ailsa Bosworth Chief Executive, NRAS

10 things not to say to someone with rheumatoid arthritis (RA)

This week is RA Awareness Week & NRAS is raising awareness of the disease that can affect people of all ages & is often confused with osteoarthritis, a wear and tear disease that affects millions of older people in the UK. RA is different – it is a chronic autoimmune disease that attacks the synovial lining of the joints & causes great pain, stiffness & fatigue.

People often tell us here at NRAS of the frustrating misconceptions that they experience on a daily basis. Here are a few examples:

1. My Nan has that!

People often assume that because of the word ‘arthritis’, RA is the same as osteoarthritis, a common condition in older people. RA can strike at any age. 2. Oh, I have a bit of that in my elbow sometimes!

RA attacks your entire body; you can’t just get RA occasionally in your elbow!

3. But you’re not old?

I know I’m not old! I said before, RA can strike at any age

4. You don’t look ill

RA can be an invisible disease. I may not look ill but I am still in so much pain, very stiff and suffering from fatigue 5. Can you catch it?

Really.....? 6. Can I borrow your blue badge?

Many people with RA need this benefit, yet feel embarrassed parking in disabled spots with their blue badge.

7. I heard it can be cured by *insert random ingredient*

Sadly, there is no cure for RA and no, cod liver oil will not cure it!

8. You should live in a warmer climate

The sun has been known to be good for joints, but not everyone with RA has the luxury of moving abroad!

9. Do you feel better now?

RA isn’t something that just goes away. With the early diagnosis and the right treatment, many can achieve remission but there is not currently a cure.

10. Presumably you’ll grow out of it?

Rheumatoid arthritis symptoms are not growing pains and the condition is unfortunately not something you can grow out of. Find out more about RA at www.nras.org.uk

Rheumatoid Arthritis Awareness Week #LookDeeper #RAAW14 by Fran

I was one of 1,954 people with Rheumatoid Arthritis who completed National Rheumatoid Arthritis Society’s survey on the impact of chronic fatigue for those living with RA. Although I mainly use the term ‘Rheumatoid Disease’ now rather than ‘Rheumatoid Arthritis’, in this context I’ll use RA. It’s no surprise that 83% of survey respondents ‘felt that the public is not at all aware of the impact that chronic fatigue has on people’s lives’. I think the general public get confused between RA and Osteoarthritis (OA) and find it hard to understand the full implications of living with an invisible illness. I think this is partly due to how the media covers rheumatoid arthritis and because fewer people have RA than OA. (According to Arthritis Research UK, 8.75 million people (in the UK) have sought treatment for osteoarthritis). In contrast, according to NRAS, around 690,000 people in the UK have RA. Although it can strike at any time, it most commonly affects those in the 40-60 age bracket, and nearly 3 times as many women as men.

Four out of five people with RA answering the NRAS survey said that their healthcare professional has never tried to measure their level of fatigue, and 50% of people stopped working within six years. Things have to change. I think healthcare professionals and employers should treat fatigue as seriously as other symptoms like pain. All healthcare professionals should integrate measuring fatigue amongst RA patients into their overall approach to managing the disease, and employers should make reasonable adjustments in line with the Equality Act to ensure that employees with RA have flexible working conditions and are not discriminated against.

This is why Rheumatoid Arthritis Awareness Week is so important: awareness leads to understanding and action that will make things easier for everyone who has RA. Friends will understand that chronic fatigue means people with RA might go out for a short time rather than staying out late. Employers will be quicker to offer more flexible working arrangements to accommodate employees’ need for treatments and pacing their work day (rather than the person with RA having to broach the topic first).

For anyone new to RA, it is a chronic, systemic autoimmune disease that attacks the joints and can cause irreversible damage which can lead to disability. Symptoms include joint stiffness, swelling, extreme pain and chronic fatigue. Simple tasks that people without RA take for granted such as boiling the kettle and opening a jar can become painful and difficult. In some cases (but not all), RA can affect organs such as the heart, lungs and eyes. Here are some facts about my invisible illness, although I now self-inject twice weekly as well as take pills.

Although there’s currently no cure for RA, a number of drugs help to slow the progression of the disease and reduce pain, swelling and stiffness. Drug-induced remission is a real possibility. Treatment includes conventional disease-modifying anti-rheumatic drugs (DMARDs) including Methotrexate and the newer biological therapies (biologics) which are given to people for whom conventional DMARDs are ineffective or who have had side-effects from them. Like many people, I tried quite a few drugs before starting the biologic Enbrel which is starting to work, reducing inflammation and stabilising my bone erosions. My chronic fatigue remains though, which is why it’s crucial that people without RA look deeper to understand this hidden aspect of the condition which can be just as disabling (or even more so) than joint pain, stiffness and swelling. Fran Cherry

@francherry78 http://30somethingwitharthritis.wordpress.com/

Rheumatoid Arthritis, Plants vs Zombies & Purple Trainers

Rheumatoid Arthritis Awareness Week – 16th – 22nd June 2014.

I have rheumatoid arthritis – RA. I’ve had it since I was eighteen, but I was aware of its existence five years before that when my mother was diagnosed with the condition. It was a shock to learn she had this debilitating and painful disease. I remember crying and wishing I could take it away from her. If only I had it instead of Mum …

RA is considered an invisible disease because many of its symptoms cannot be seen – pain, chronic fatigue, sleeplessness, to name a few.

I can show you my hands and you’ll see scars, nobbly knuckles and fingers with an amazing ability to point round corners, but to see me from across the street, you’d struggle to identify the problem.

And, if you do see me from across the street, that means it’s a good day, and one when I am able to go out. Perhaps the weather’s warm and dry, or I’ve had a rare, but wonderful night’s sleep, or maybe it’s shortly after my weekly injection.

Look at my shoes. They’re comfortable, supportive, sensible. Okay, maybe not sensible in the strictest sense of the word, but there are no killer heels in my wardrobe. Am I wearing trousers? Jeans? Crops? probably, because I struggle to find shoes to wear with skirts and dresses. I have too many dropped or inflamed joints in my feet and my ankles are too weak to withstand fashion footwear.

Dawdling is often my top speed, pulling a zip up on my coat is an achievement worth celebrating, and discovering beautiful pens I can hold takes me way beyond thrilled. Seriously. I love pens. You knew that.

For me, RA is a way of life. I’ve never been a homeowner or worker without it, I had RA years before I met and married Gajitman, and our children have grown up accepting Dad’s the parent who will roll down the hills with them, take them kayaking, or instigate a bundle in the living room. But that’s dads and children, isn’t it?

I’ve had the honour of sharing my love of reading and music with our children, the pleasure of discussing the merits of defending a virtual garden with tallnuts when the zombies attack, and the joy of cuddling up together to watch Disney’s Peter Pan fifteen times in one week.

It’s probable I’d have done the same even if I’d not had rheumatoid arthritis, and if I was offered a guaranteed magic cure, I’d take it, but I am certain I’ve seen things in my life I would have passed by had I been going at full steam.

For more information about rheumatoid arthritis, please visit the National Rheumatoid Arthritis Society page.

Take care.

Laura x

Laura James, Author - @Laura_E_James http://www.lauraejames.co.uk/

Invisible Disease by Daniel Malito

Invisible Disease. What an interesting turn of phrase. Invisible to whom? The patient? Loved ones? Complete strangers? The ambiguity of the expression is confusing, but it is also a perfect metaphor for what it’s like to live with a disease like rheumatoid arthritis and other autoimmune conditions.

When someone says “invisible disease,” most people assume it means physically imperceptible to others, and rheumatoid arthritis is right up there at the top of the list. For instance, I have experienced this myself when parking in the handicapped spots provided for those of us who have trouble walking long distances. Even at 2am, there always seems to be someone waiting to shake his or her head and make that “tsk, tsk” sound as I exit my vehicle. I imagine this is because everyone assumes all disabled people must be horribly disfigured or walk like an employee of Monty Python’s Ministry of Funny Walks. Ironically, these disapproving clucks usually come from healthy individuals who have decided to temporarily take up residence in one of the handicapped spots while a passenger runs into the pharmacy to pickup their anti-psychotic medication or a month’s salary worth of scratch off lottery tickets. As soon as I exit my vehicle, the shaming begins, and these upright citizens always feel like they are performing some indispensible service to society by humiliating me into moving my car. For a long while, I would stop and attempt to educate these Rhodes scholars, but all I ever got were blank stares like I had asked them to solve Fermat’s Last Theorem. So, now, as ashamed as I am to admit it, I find myself simply throwing a bit of a limp or making sure I look sufficiently forlorn when I slowly slip out of my car, just to avoid the piercing stares of the ignorant.

Invisible disease doesn’t have to mean simple physical unawareness either, autoimmune diseases like rheumatoid arthritis suffer from a startling lack of awareness. During my many years as a bachelor, I was able to confirm this general ignorance firsthand. Some of the questions I entertained during dates were truly priceless. One of the most popular questions was “How did you get it so young?” To which I usually explain the difference between osteoarthritis and rheumatoid arthritis. This question is forgivable, surely, as it represents one of the biggest myths in modern disease lore. Some of the more outrageous things I’ve heard, though, will make you cringe. “Is it contagious?” “Oh, Michael J. Fox has that!” and, my personal favorite, “Oh, did you get it from another man?” To be fair, though, the girl who asked that last question had a string tied around her finger so she didn’t forget to breathe. These comments show you just how deep the unawareness about autoimmune disease and arthritis flows, truly, we are invisible in this sense as well.

Yes, autoimmune disease can be invisible to others, and I think I’ve proved that fairly conclusively. What’s ironic is that there are times that those of us who are affected, wished our disease really were invisible. It especially happens to those of us who were diagnosed at a young age and had to suffer through puberty and primary school while dealing with unspeakable pain and discomfort. I was diagnosed at age nine, and all I wanted when I was thirteen was for my disease to disappear.

I remember one particular instance during Middle School. I was about twelve years old, and at that point I was still required to attend gym class. That’s PE for you British folks, and although I was able to skip it altogether in later years, at that time in my life I was still required by the school administration to physically be in the gymnasium during the class. Since I wasn’t able to participate, though, I was made to sit on the side of the gym and watch all my classmates play and have fun without me. It was a kind of torture, and I hated every minute of it. The coaches were no help, as they had absolutely no sympathy for anyone who couldn’t or wouldn’t join in the sporting activities they had planned. If you were unable to throw a ball of any size into any one of several different receptacles, then you weren’t fit to be a member of the human race, and especially not their gym class. So there I sat on the sidelines, wishing that my disease were invisible, pleading with God or my doctors to come up with some miracle drug that would take my symptoms away so that I could join in with my friends for even one game of gym hockey.

It never happened, of course, but that feeling still pops up from time to time. I wish my disease was invisible when I worry about having kids, I wish my disease was invisible when I have a late-night engagement, and I sure wish my disease was invisible when meeting new people. It’s a double-edged sword, invisibility, and those of us who suffer with autoimmune disease deal with the question each and every day. Whether I’m faking a limp when getting out of my car, or doing my best to walk smoothly when on a dinner-date, invisibility plays a huge part in having rheumatoid arthritis. This condition truly is an invisible disease.

Daniel Malito @danielpmalito

Author, Columnist, Raconteur http://www.danielpmalito.com/

My Invisible Illness: Auto Immune Arthritis by Jessica Louise

If you walked past me on the streets, most of the time I would like a normal 23 year old girl. The makeup I wear hides the bags under my eyes that derive from sleepless nights full of joint pain, the tablets that I'm on enable me to walk, but you can't physically see how much pain I am enduring and I might look a little bit overweight if you pass me in the streets, but I do try go to the gym, my joints don't like it anymore.

I once got to the stage where I was almost the epitome of good health. I was born premature, I diagnosed with asthma only a month later and ever since I popped out of my mothers stomach I've had problems. Almost four and a half years ago I made the conscious effort to lose a lot of weight and get my health back to scratch. I lost almost six stone through dieting and going to the gym and for once I was confident with my self and my health had improved.I barely had any health complaints and I was leading a normal life, fitting into clothing I never thought I'd have the opportunity to wear and exercising ferociously, something that I learnt to love.

I don't know how it what happened, what caused it and why it started to happen almost two years ago, I just started experiencing joint pain. I put this down to a lot of exercise and the fact that I have always had little bits of joint pain growing up, but nothing like this. The pain some days make the smallest of tasks so hard to face. Climbing up stairs was some days like being asked to climb up mount Everest. Within several months my health had deteriorated and I spent everyday in pain. My life became a yo-yo of being in and out of doctor appointments. All the doctors looked at me as though I was lying and this made me feel ridiculously paranoid. I began to think am I losing my mind? Is this normal? My iron levels started to drop and on top of the pain, I started to feel the fatigue. In some cases, the fatigue felt worse than the pain. It was so debilitating. I just needed constant rest and I didn't know why. Eventually I saw one doctor that believed in me and she said it was about time that I saw a rheumatologist. I headed up to my local rheumatology ward and had a series of tests - the rheumatologist even said:" I very much doubt I'll find anything, you are just suffering from teenage pains like most girls." I started feeling rather depressed when I heard that a joint specialist didn't believe I had anything wrong.

When I returned back to the rheumatologist, she shook her head and told me that the test results were inconclusive, but to not fear as she had one last plan up her sleeve. It was the ultrasound of my joints that finally confirmed what I had known all along. I have rheumatoid arthritis. It just so happened that the day of my tests, the sonographer was having an assessment and that there was a doctor in the room. When they scanned my wrists, hands and feet they found moderate swelling of my joints and finally showed me what was causing all my pain.

According to NRAS, the National Rheumatoid Arthritis Society:

Rheumatoid arthritis (RA) is a chronic, progressive and disabling auto-immune disease affecting 580,000 people in England. It is a painful condition, can cause severe disability and ultimately affects a person's ability to carry out everyday tasks. This disease can progress very rapidly causing swelling and damaging cartilage and bone around the joints. Any joint may be affected, but is is commonly the hands, feet and wrists. It is a systemic disease which means that it can affect the whole body and internal organs (although this is not the case for everyone with RA) such as the lungs, heart and eyes.

There is no cure for Rheumatoid Arthritis, just treatment that can help manage symptoms and delay any further damage. As I have only just started the treatment, I am awhile off remission, but at the moment I am coping relatively well. Some days I look normal and I can do the things I love, but other days can be a huge struggle. I try not to let it get the best of me as life is too short to dwell on things, you just have to live through it. But I can't ignore how RA has changed my life. I've gained a bit of weight (luckily only half stone) and going to the gym is difficult. I've lost some of my independence as I struggle to lift certain things and do the tiniest things some days. However I have gained the insight into a very different life and I am now able to take what I have for granted and I am constantly reassured that no matter how hard life is, there is always someone out there who is worse than me. I want to do things to help raise the profile of RA and show people that it is a difficult illness, but for those people out there suffering just like me, I want to use my blogging platform and my media skills to show these people that they aren't alone. This week is Rheumatoid Arthritis awareness week and I hope that if you read through even half of this post, that it changes how you see people. People might look healthy and normal, but sometimes they are struggling and need help.

Check out http://www.nras.org.uk/ for more information.

Jessica Louise is a Digital Marketing Exec and Fashion, Beauty & Lifestyle Blogger

@JessycaLouise http://www.forevermissvanity.com/

Linda Riordan MP guest blogs for RA Awareness Week!

The National Rheumatoid Arthritis Society(NRAS) and leading think tank 2020health have just published a joint report on the impact of chronic fatigue on people with rheumatoid arthritis (RA). The new report raises some interesting questions about the way ‘invisible symptoms’ are assessed during welfare claims and is very timely in light of Work and Pension’s Committee discussions about the efficacy of the Work Capability Assessment.

For those of you who don’t know, RA is a chronic autoimmune disease which chiefly impacts upon the joints but can also affect other organs such as the heart, eyes and lungs. RA is often confused with osteoarthritis, which is an entirely different disease caused by wear and tear of the joints as we get older. Around 690,000 adults have RA in the UK, with approximately 26,000 new cases diagnosed each year in England alone.

Publication of the new report coincides with the launch of this year’s Rheumatoid Arthritis Awareness Week and it calls for the introduction of an additional descriptor into the Employment and Support Allowance’s Work Capability Assessment (WCA) to ensure the impact of chronic fatigue is adequately captured.

The call is based on new evidence presented in the report, which shows that chronic fatigue exerts a large impact on people with RA and their ability to work: nearly 9 out of 10 people with the disease experience it; and around three quarters of working age people with RA, who are unemployed, state chronic fatigue contributed to them not being able to work.

To underline the point, the report cites evidence that 50% of people with RA were placed in the ESA Work-Related Activity Group (WRAG) between 2008-2011 and deemed able to eventually return to work, even though a subsequent survey in 2013 found that 21% of people with RA who had undertaken a WCA believed it took insufficient account of the impact of fatigue.

As the National Rheumatoid Arthritis Society keeps pointing out, the numbers placed in the WRAG seem high compared to the high level of worklessness attributed to RA in several research studies –with a third of people forced to stop work within 1 year of diagnosis and up to a half forced to stop within 6 years.

What also comes over loud and clear from the report is that people with RA want to stay in work and that they only give up work very reluctantly due to the physical effects of the disease. Being told they should prepare to make a return to work, especially in cases where they have already been given retirement on medical grounds, does not make sense and is extremely distressing for claimants.

Three years ago several major national charities produced a report on fluctuating conditions, at the request of Professor Harrington (an independent reviewer appointed by the Department for Work and Pensions), which recommended the introduction of a new descriptor to cover fatigue and pain. Fast forward to 2014 and this specific concern has not been addressed.

With the Work and Pensions Committee having just completed its final oral evidence session for its inquiry into ESA and the WCA, I sincerely hope the Committee will take account of this report’s evidence and its renewed calls for fatigue to be better assessed within the WCA, and reflect this in the Committee’s final report recommendations.

Invisible Disease: Rheumatoid Arthritis and Chronic Fatigue is available to download from the National Rheumatoid Arthritis Society website here.

Linda Riordan is the Labour MP for Halifax.

New blog launched for RA Awareness Week 2014

We are very excited to launch a new blog to coincide with the start of Rheumatoid Arthritis Awareness Week 2014!

We asked our members what this year's campaign theme should be and they told us to focus on the 'Invisible Disease’. We used your experiences and ideas about how you have felt invisible with RA or times where people haven’t understood the condition, and came up with three poster concepts. Our members Angie, Carla and Jake feature in the three images which portray situations where someone with RA feels their condition is not understood because it is hard to see the physical effects for those around them. We are particularly focusing on pain, stiffness and fatigue, which is the basis of a new study we are publishing this week.

We need your help to raise the profile of RA as much as you can and change the public perception of this condition. Head over to www.nras.org.uk/RAweek to see how you can get involved!

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