Awareness day is longer this year

In the month of May we will be showing the buildings that have decided to light up for International Awareness Day on May 12th. This includes the First Ministers residence in Scotland once more but we have more buildings to show as well as sharing images from campaigns past like Dumfries House. 

Rather than just one day in May, we will be sharing throughout the month, fibro facts, combatting the myths, and also giving you an idea of what people find helps them with their fibro.

Our team also has a number of external presentations with Des speaking to Great Ormand Street Hospital for the first time. We will be raising awareness of fibromyalgia with their staff.

Our online support group will be running on Thursday 1st, 15th and 29th at 6.30pm. Later in the month Hazel will be presenting at the Wales Adult Learning Coffee Morning.

Keep an eye on our Socials for more content. 

The buildings that have confirmed so far are:

Council Buildings, Dumfries

Dunoon Pier, Dunoon

Town Hall, Dunoon

Castle Gardens, Dunoon

St Andrews House, Edinburgh

Tower 42, London

McCaigs Tower, Oban

Hoping for a few more to confirm in the next couple of weeks.

Why I need to keep my Personal Independence Payments (PIP)

 Alice Bishop was recently interviewed on BBC Look East about the importance of receiving PIP. She has written the following for us.

Each morning, I wake to a sharp pain shooting up my spine, accompanied by muscle aches that feel as though I have run a marathon. Yet, as always, I must summon the strength to rise and start the day for the sake of my young son. I hide my pain from him, determined not to let my struggles show.

I begin the morning routine: feeding our cats and dog, reminding my son to get dressed for school, and taking my medication, which provides modest relief. My son is autistic and wonderfully curious, his endless questions a testament to his inquisitive mind. On days like today, when the pain is particularly severe, I rely on a walking stick purchased using my Personal Independence Payment (PIP) to navigate even the small confines of my home.

Thankfully, my son's father, who remains a close friend, visits to spend time with our son and take the dog for a walk. As I sit on the sofa, tears brim in my eyes—tears of frustration at the relentlessness of fibromyalgia. I wish, even for a moment, that the pain would subside.

On better days, I venture out in my mobility car to visit my grandparents, though anxiety about falling often makes leaving the house daunting. At just 28 years old, I am determined not to let fibromyalgia confine me entirely. The support I receive through PIP is invaluable, whether it goes toward physiotherapy tape, mobility aids, or even something as simple as ibuprofen. The migraines, however, are the hardest to endure; the pounding in my head renders me unable to lift it from the pillow. An ice mask, another purchase made possible through PIP, offers some solace on those harrowing days.

Yet, despite all efforts to manage my condition, I often feel dismissed by medical professionals. The mention of fibromyalgia seems to elicit a lack of empathy and engagement, leaving me to shoulder the cost of many necessary aids and treatments myself.

The prospect of the government cutting PIP is deeply alarming. For many, including myself, this support is not just financial—it is a lifeline that enables us to manage our health and maintain some semblance of independence. The idea of forcing disabled individuals back into work without adequate consideration of their circumstances is both unrealistic and unjust. While I may sound eloquent in writing, the reality of working in a professional environment is far different. My fibromyalgia, coupled with numbness in my left leg, makes even basic tasks a struggle. I have experienced firsthand the consequences of inadequate workplace adaptations and the stigma surrounding chronic illness. Despite promises of support, I know of individuals whose workplace accommodations were never implemented, leaving them vulnerable and unsupported.

I have been dismissed from employment in the past due to frequent absences caused by ill health—at a time when my condition was far less severe than it is now. The notion that someone like me could feasibly return to work under these circumstances is simply untenable. It is disheartening to think that policymakers, including Sir Keir Starmer, might overlook the realities faced by those with disabilities. Cutting PIP would not only jeopardize the financial wellbeing of countless individuals but also exacerbate the physical and emotional toll of living with chronic conditions. It is imperative that the voices of disabled individuals are heard and that their needs are prioritized in policy decisions.

Editor's note: Pip is paid to more than 3.6 million people who have a long-term physical or mental health condition in England, Wales and Northern Ireland.

A DWP spokesperson told the BBC: "Our reforms will unlock work for sick and disabled people who can and want to be in employment - backed by a £1 billion support offer to guarantee tailored help into work - ensuring they are supported to live with dignity and independence, whilst making sure that everyone who can realise the benefits of work is expected and supported to do so."

Thank you for all that responded to our trustee advert

I would like to say thank you to everyone that responded to our request for new trustees. We have been overwhelmed by the response and I am sure we have future trustees within the respondents.

We will be reaching out to individuals to outline the next steps. Thank you to those that have replied to volunteer in other ways.

Make Your Feelings Known

A survey has found that the majority of the public do not support the proposed PIP cuts and apparently at least 27 Labour MPs have already said that they will vote against the cuts and another 15 have spoken out against them. One Labour MP has launched a petition against the Green Paper proposals so it really seems that this is a good time to make your feelings known to those that matter. Earlier in the month, we sent out a newsletter from one of our partners, Benefits and works with links to different ways in which you can get involved. You can access thoses links here

Trust me, I’m chronically ill

Tara-Lyn Camilleri, PhD

Our bias  is what is stopping us from understanding and working with dynamic illness and disability.

Just push through — that’s my internal monologue as I feel my eyelids flickering, my dizziness rising, acid burning the inside of my stomach. Dull aches spread throughout my body, a piercing pain sears through my forehead. As the moments pass and I take the vials, transferring the flies from one vial to another, painful numbness spreads down my legs. Nausea rises, and the dull aches sharpen and grow louder. I shift in my uncomfortable seat, which does not adjust, constantly reaching over for the next vial. I transfer the flies from the one vial to another, giving them a meal that smells like rotting veg to me. I am hot all over, and the lights seem blindingly and painfully bright. I’m not going to make it, I think as I run to  the loo but end up standing at the bin, dry heaving. This memory is from when I was completing my PhD and trying to get through my lab work. Although those moments are clear, how many times they happened or even which experiment I was conducting is hazy. Was it before or after the gall bladder surgery, the fibro diagnosis, or the pandemic? I don’t really remember. I was sick, so why was I working at all?  Why was I alone? Not asking for help? The answers are complex but can be summarized thus: because I am chronically ill. My conditions sometimes improve, sometimes get worse, but they will never be “all better”. This is called dynamic illness or disability — conditions that fluctuate in severity from day to day, hour to hour, or even moment to moment, meaning one’s physical and cognitive capacity is not fixed.  I believe that dynamic illnesses and disabilities are not well understood and chronic illness sufferers won’t be treated better in any workplace until we are actually trusted, and the true principles of equity are accepted and embraced. 

Even when employers believe they are being flexible or accommodating, it’s often just lip service — offered only until they perceive those accommodations as affecting the desired outcome (whether it actually does not). In a 2023 investigation in the US on why prime-aged adults (25–54) were not working, over a third cited illness or disability, approximately 10 million people. Not all of these people can return to the workforce, and perhaps not every job can be modified for every person, but the shift to remote work brought 1.8 million of them back to the workforce — because it made work more accessible for them. A study of over 3,000 Canadians with mental and cognitive disabilities found that nearly 36% reported unmet workplace modifications, and almost 20% said they couldn’t get the flexibility their disability required. Many feared that pushing for flexibility would make their employment situation even more fragile. Other countries have similar issues, even in countries where social equity is embraced in policy. These are still complex societal and economic problems to solve. But the truth is economists have known for quite some time that granting flexibility and accommodations leads to productivity gains through inclusion, reduced reliance on welfare, and long-term returns on investment. Over a lifetime, the employment of a disabled individual generally offsets the initial investment. This applies even to large expenses like job restructures or building modifications — costs that often pay off in the long run.

There are also broader economic spillovers: more people working means more consumer spending, greater workforce participation, and reduced social inequality. These factors combine to produce a net positive effect on the economy. But it’s not just good for the economy — it’s good for individuals. Research shows that if people with chronic illnesses and disabilities can work in a way that doesn’t exacerbate their condition, they gain meaning and purpose. I know that I don’t want my illness to stop me from supporting myself, progressing in my career, or building stronger social connections. While work may not cure an immutable health condition, it can improve overall well-being and the interaction between mental and physical health.  So, if we know this is better for literally everyone, why are we not doing a better job of it? Ah! WELL — it’s time to address the elephant in the room.

Because. No one. Trusts. Us.

Or at least, most don’t understand the day-to-day experience of being dynamically disabled, and due to inherent bias, many won’t believe you even when you explain it. Think about it: you have two people, one is a scientist who put themselves through multiple degrees, completed a PhD, and worked at The University of Oxford. The other is unemployed, wakes up late, and watches TV for a few hours, and it might be after 12noon before they do anything "productive". They say they find it hard to work regular jobs because they can’t wake up as early as required. Now, imagine they both tell you they have a chronic illness that limits their physical capacity and energy levels, but that it is different day to day. They both need a lot of rest and suffer from pain, fatigue, cognitive and neurological difficulties and malaise. What do you think? I’m sure you believe them both, right? But how does that belief translate into how you perceive them? How does it shape your assumptions about their capabilities? Maybe you think the first person is more resilient, less sick than they claim. as they’ve accomplished so much. —  As for the second person, maybe they’re simply not disciplined. Waking up late and watching TV doesn’t sound productive — perhaps they’re just depressed from a lack of routine? Well, here’s the truth: they’re both Me. I am both of these people. I created this contrast to show how easy it is to fall into bias. It’s automatic. It triggers a desire to evaluate, suggest solutions, or even downplay what someone tells you. This is what we’re doing to chronically ill and disabled people ALL THE TIME. If you want to be an ally, the best thing you can do is trust us. Believe what we tell you. Trust me when I say my 24 hours are not the same as yours.

A nurse suggested I do yoga and meditation. I told her they can’t fully resolve my nervous system dysfunction. Her response? “Be consistent, every day for years for them to work.” This showed she didn’t understand my illnesses. She didn’t believe me when I told her that I’ve done every evidence-based lifestyle modification, After the appointment, I checked my apps, 1,040 mindful days across 4,532 sessions and 431 yoga practices, totalling 140 hours. Our culture glorifies overwork and worships productivity. We live in a society that equates waking up early with discipline and sleeping late with laziness. Pushing through is stoic and worn as a badge of honour, while anything else is seen as weakness. We have a tendency to judge people’s worth not by who they are and how much they produce, but by our perception of their productivity and how visibly they produce it. These entrenched biases underpin how we treat chronically ill and disabled people and are the real barriers to flexible work and accommodations.  But here’s some more truth: productivity doesn’t look the same for everyone, I might be working ten times as hard to maintain a basic standard of wellness — or you might be working ten times harder than me. And that is not underperformance — that’s meeting the requirements for survival. Until we accept that everyone starts from a different place and requires different accommodations — and that those accommodations take nothing away from others — we will continue to fail millions of people. And that failure doesn’t just hurt them, it hurts all of us. We need workplaces that don’t just ask, ‘What do you need?’ but actively challenge their own perceptions and follow through, creating mutually meaningful ways for us to contribute. And we must trust that the majority of people want to work, be productive, and contribute — they’re not trying to take advantage of anyone.

So yes, trust us. Trust me. And I’ll trust you.

This is an edited version of Tara Lyn's article. You can read the full version here.

The Durham Group recently held their annual open day at their weekly Pain Cafe which meets at Brandon Community Hall. They find that holding an open day not only gets the word out to the local community, but also brings together a good network of professionals to network and help each other. The day was a great success with plenty of people going along for information. 

As well as the regular members who helped out, they welcomed Angela Campbell, the FMA UK Regional Coordinator for the North East, local social prescribers, physiotherapists,  Age UK, Wellbeing for Life, Employability Durham, Thrive, Paul L Chazot who came from Durham University, Joanne from the Bowen Technique, Les and Pam from Prostrate Cancer and The Balbir Singh Dance Company from Leeds. Su, who leads the group works with the dance group and Professor Paul L Chazot on a programme called Unmasking Pain which has been successful. She also works with Professor Chazot and Dr Francis Cole training GPs as a Lived Experience Trainer for Live Well with Pain delivering the 10 Footsteps to Living Well with Pain programme which she also delivers to the group.

You can contact Su about the group on 07919432803 or by email using the button below

May 1st, 15th and 29th

Free Online Support Group

Online fibromyalgia support group session hosted by Chronic Pain & Fibromyalgia Support Group (Kent) and FMA UK. Join Zoe & Hazel for an hour of fibromyalgia chat and sharing experiences.

Thursday 1st, 15th and 29th May from 6.30 - 7.30pm. The meeting will take place on MS Teams - camera can be on/off. The meetings are free but you will need to go via the link below to register and join.

https://www.tickettailor.com/events/fmauk/1662302 to register and receive a link to join

Do you have any questions for the team?

The team here at FMA UK have a incredible wealth of knowledge between them. Do you have any questions that the FMA UK Team may be able to answer for you? We are unable to deal with any personal situations in this medium but would welcome any general questions for general answers. Don't forget, if you want to know, it is probable that a lot of other people do too!