A Hidden Army of Women: Fibromyalgia & Living with Chronic Pain

When applying for Social Security benefits such as Employment and Support Allowance (ESA) and Personal Independence Payment (PIP), people with fibromyalgia and chronic pain join the “hidden army” of those whose health conditions are consistently misunderstood and easily overlooked by the Department for Work & Pensions (DWP) and its private health-care assessors.

12 May 2021

Kayla Trigiani, Caseworker

Fibromyalgia is a long-term disorder characterized by chronic pain and fatigue all over the body.  It is predominant amongst women, although men can get it too.  Chronic pain has also been coined ‘the hidden disability’ for similar reasons. Those living with these conditions consistently struggle to prove and validate the disabling impacts of chronic pain on their lives. And they often struggle to get the benefits they are entitled to.

Those who suffer from chronic pain know what they are feeling in their bodies, but it is difficult to explain as the condition follows no set pattern or triggers, and many assessors fail to understand this.  In the absence of a long-term cure for chronic pain sufferers, individuals and their insight into their own illness should be taken seriously and assessors should start listening and believing individuals when they say they are in pain. Many assessors seem to be too quick to downplay the experience of these individuals as exaggerating or faking their pain, which denies the disability because it is invisible to the naked eye, much like we have seen with mental health diagnoses.

Deceivingly, fibromyalgia is unique. Although it is grouped with other rheumatic diseases such as arthritis, lupus and chronic fatigue syndrome, it doesn’t fit within the tight confines of a joint or muscle disorder. It also doesn’t fit the grouping of inflammation or an autoimmune disorder. It has been misdiagnosed and misunderstood for centuries, and gendered biases have played a major role in this. Female hormones are believed to play a role in the higher incidence and severity of the disorder in comparison to males. During my time at Z2K, I have represented many women who suffer with fibromyalgia.

Sofia was a fitness instructor for 26 years. When her health began to rapidly deteriorate and her trusted doctor passed away, she decided to take charge of her condition and began researching her mystery symptoms, which ticked all the boxes of fibromyalgia: widespread chronic pain, fatigue, poor sleep, headaches and cognitive problems (‘fibro-fog’), dizziness, vertigo, tinnitus, digestive issues, clumsiness, increased sensitivity to pain, anxiety and depression. When applying for PIP, Sofia struggled to complete the relevant forms. Some days she was completely bed-bound, but on the other days her ability to function was so dependent on her wide-array of fibromyalgia symptoms, which all had a spiralling effect on each other. For example, her chronic pain would keep her awake at night, affecting her ability to sleep, which would then cause her terrible headaches and vertigo the next day, leading to an increase in her Fibro-fog: difficulty concentrating, forgetting new information and even difficulty holding a conversation. How could she explain all this by just ticking a box?

Sofia was awarded 0 points and the Health Care Professional (HCP) chalked up her symptoms to simply suffering a bereavement, although her symptoms went far beyond merely ‘feeling tired or exhausted.’ When people with chronic illnesses are denied benefits on the basis of not ‘ticking the boxes’ of a traditional impairment, this completely insults their integrity, their bodies and their honesty.  After we appealed to the First-Tier Tribunal, Sofia was awarded “double enhanced” PIP: daily living and mobility for at least six-years. Sophia was relieved that someone had finally believed her. She had believed her body for years, listening to its relentless and debilitating aches and pains, but this was a sense of validation for her condition that she had never once received before.

The DWP reflects an old, outdated theory in its decision making: its assessors and decision-makers fail to listen to and understand what the individual is suffering with, so it’s the individual’s body that is faulty, but not faulty enough to secure the benefit. This is such a problematic concept, because it adds blame on the individual for not ‘being disabled enough’. In reality, fibromyalgia is an officially-recognised disability. Chronic pain is becoming increasingly understood and studied, but the impact on those suffering it is not accurately reflected during DWP’s flawed assessment processes. For Sofia and for me too, the system is set up so individuals are knocked down, and they are kept down by the lack of care and understanding about these chronic illnesses.

As part of the upcoming Health & Disability Green Paper consultation, it is vital that Government acts to ensure peoples’ own testimonies of their conditions are taken seriously, as opposed to undermined or misunderstood by the assessor – in turn preventing people like Sofia from having to go through the incredibly stressful, time-consuming and demeaning Mandatory Reconsideration and Appeals process.