We Are Not Villains: Living With Chronic Illness, And The Weight Of Public Judgment
The shift I have felt lately
There has been a real shift in the way disabled people, chronically ill people, and benefit claimants are being spoken about online, in the media, and sometimes even in everyday conversations. It is harsher. Colder. Like there is this growing anger directed at people who are already struggling just to get through the day.
I keep seeing words like “scroungers”, “lazy”, “benefit cheats”, and “burden on society” being thrown around so casually. There seems to be this idea building that disabled people are somehow personally responsible for the country’s problems. That people who cannot work full time because of illness are taking something away from everyone else.
And, it hurts.
Not just because it is cruel, but because so many of us living with ME/CFS and fibromyalgia already carry enough guilt without society piling more onto our shoulders.
Most people do not see what chronic illness actually looks like behind closed doors. They do not see the exhaustion that feels like your body has been filled with concrete. They do not see the pain that sits in your muscles from the moment you wake up. They do not see the brain fog, the dizziness, the crashes after doing something as basic as showering or replying to messages.
They definitely do not see the grief.
Living with ME/CFS is not “being tired”
One thing that frustrates me endlessly is how misunderstood ME/CFS still is. Even now. Even after years of awareness campaigns and research discussions.
People still compare it to ordinary tiredness.
I cannot even explain how far removed that is from reality.
ME/CFS exhaustion is not fixed by a nap. It is not feeling a bit worn out after a busy week. It is full body depletion. It is feeling physically poisoned after overdoing something tiny. It is your body shutting down because you used energy you did not actually have available.
There have been days where brushing my hair felt like climbing a mountain. Days where my muscles burned from walking downstairs. Days where holding a conversation genuinely exhausted me.
And fibromyalgia adds another layer to that experience. The widespread pain. The hypersensitivity. The sleep that never feels restorative no matter how long you stay in bed. The way your nervous system seems permanently stuck on high alert.
Trying to explain chronic fatigue syndrome and fibromyalgia to people who have never experienced it can feel impossible sometimes because the symptoms sound invisible on paper. But invisible does not mean imaginary.
The emotional impact of being viewed as a burden
I think one of the hardest parts of chronic illness is the psychological weight of constantly feeling like you need to justify your existence.
There is this pressure to prove you are sick enough.
Too sick to work normally.
Too sick to function consistently.
Too sick to be judged.
But if you smile one day, leave the house once, or manage to post online, suddenly people think you must be fine again.
I have genuinely seen people speak about disabled benefit claimants as though we are choosing this life. As though being isolated, exhausted, financially stressed, and physically unwell is somehow preferable to being healthy and independent.
Nobody dreams of becoming chronically ill.
Nobody wakes up hoping their world will shrink.
I would love to have unlimited energy. I would love to make plans without calculating recovery time afterwards. I would love to exist without constantly monitoring symptoms, pain levels, crashes, medications, appointments, and pacing.
People living with chronic illness are not villains. We are human beings trying to survive in bodies that no longer cooperate with us.
The reality of disability benefits and chronic illness
There is also this huge misconception that people claiming disability benefits are somehow living comfortably.
I honestly do not know where that narrative comes from.
Living with long term illness is expensive.
Heating costs rise because pain and symptoms worsen in the cold.
Mobility aids cost money.
Special dietary needs cost money.
Prescriptions, transport to appointments, supportive items for pain management, and household adjustments all add up.
And beyond finances, there is the emotional exhaustion of the benefits process itself.
The forms.
The assessments.
The fear.
The constant need to relive your worst symptoms in detail just to be believed.
For many people with ME/CFS and fibromyalgia, stress itself can worsen symptoms dramatically. Yet the system often forces chronically ill people into repeated cycles of anxiety and uncertainty.
I spoke a bit about this emotional exhaustion in my post about chronic illness and appointment fatigue.
Invisible illness does not mean fake illness
I think social media has made this issue worse in some ways because people only see snapshots of somebody’s life.
They might see a chronically ill person smiling in a photo and assume they must be healthy. What they do not see is the recovery afterwards. The flare. The days spent in bed because that one outing used up every bit of available energy.
People with invisible illnesses become experts at masking because society rewards us for appearing “normal”.
But masking comes at a cost.
I know I personally spent years pushing far beyond my limits because I did not want to seem lazy or dramatic. I ignored crashes. I minimised symptoms. I apologised constantly for needing rest.
And all it did was make me worse.
Pacing with ME/CFS is not laziness. Resting with fibromyalgia is not giving up. Sometimes those things are the only reason we remain functional at all.
Society seems to value productivity above humanity
One thing I have really reflected on lately is how much human worth is tied to productivity in modern society.
People are praised for pushing through burnout.
Working while sick is normalised.
Rest is treated almost like a moral failure.
So when somebody cannot participate in that system in the expected way, people become uncomfortable.
There seems to be this belief that if somebody is not economically productive, they have less value.
But human beings are more than output.
Chronic illness forced me to confront that in a very painful way because so much of my identity used to be wrapped up in what I could do. Once illness strips that away, you realise how deeply society conditions us to earn compassion rather than simply deserve it.
Disabled people should not have to prove their humanity through suffering.
The anger should not be aimed at vulnerable people
What frustrates me most is that so much public anger gets directed at the wrong people.
People struggling with chronic illness are not responsible for underfunded systems.
We are not responsible for political failures.
We are not responsible for economic problems.
Most of us are simply trying to survive while managing conditions that already take everything from us physically, emotionally, socially, and financially.
I think many able bodied people underestimate how quickly life can change.
Illness does not discriminate.
Disability is not something that only happens to “other people”.
A car accident, a virus, an autoimmune condition, burnout, neurological illness, or chronic pain condition can alter somebody’s entire life in ways they never expected.
None of us are guaranteed permanent health.
Compassion should not be conditional
I think the thing I wish people understood most is that disabled people do not need suspicion. We need compassion.
We need support systems that recognise human dignity.
We need healthcare professionals who listen.
We need governments that stop treating vulnerable people like statistics.
We need media narratives that stop fuelling resentment toward disabled communities.
And maybe most importantly, we need people to stop assuming they know what somebody’s body feels like just by looking at them.
Because behind every benefit claim, mobility aid, blue badge, cancelled plan, or quiet absence from normal life, there is usually somebody grieving the life they thought they would have.
Not somebody trying to cheat society.
Final thoughts
Living with ME/CFS and fibromyalgia already comes with enough emotional weight without carrying public judgment too.
Most of us are doing the best we can in circumstances we never asked for.
We are adapting constantly.
We are surviving constantly.
We are fighting battles most people never even see.
Despite what some headlines or comment sections might suggest, disabled people are not the enemy.
We are not villains.
We are people.
About me
I am a married mother of four children. One of those four children is our granddaughter, for whom we are SGO (legal guardians)/kinship carers. I run a small business and enjoy writing, so I blog. My blog focuses on my family life as well as my experiences of living with chronic illnesses and disabilities such as ME/CFS, spinal stenosis, chronic pain, and fibromyalgia. Oh, and I am only in my mid-40s.
FAQ
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For me, ME/CFS is far more than feeling tired. It is exhaustion that affects every part of my body and mind. Even simple tasks can trigger crashes, pain, dizziness, brain fog, and days of recovery afterwards.
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Fibromyalgia affects so much more than pain alone. It can impact sleep, memory, concentration, energy levels, sensory sensitivity, and emotional wellbeing. Living with fibromyalgia often means constantly balancing symptoms while trying to maintain some sense of normality.
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I think a lot of it comes from misunderstanding. Many people still expect illness to “look obvious”. If somebody smiles, leaves the house occasionally, or manages one good day, people assume they must be fine. What they do not see is the recovery, pacing, or flare ups happening behind closed doors.
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No. Resting is not laziness when your body is struggling to function properly. Many people with chronic illness spend huge amounts of physical and emotional energy simply trying to get through daily life.
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Unfortunately, media narratives and political discussions often portray disabled people unfairly. In reality, most chronically ill people would much rather have stable health, independence, and freedom than rely on support systems.
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Yes. Stress can worsen symptoms significantly for many people living with chronic illness. Emotional stress, overexertion, lack of rest, and pressure to “push through” can all contribute to crashes and flare ups.
Disclaimer: This post is based on my personal experiences living with ME/CFS and fibromyalgia. I am not a medical professional, and this content should not replace professional medical advice, diagnosis, or treatment.