When we're the only one who knows the truth
- Laura Martin
- Jun 9
- 10 min read
Updated: Jun 16
There is a moment that many of us know all too well: We're sitting in a GP appointment, a hospital consultation, a care needs assessment or even a family gathering and the person we care for is talking confidently, perhaps even joking. They answer questions clearly, they minimise their symptoms, they brush aside concerns and by the time the conversation is over, everyone in the room seems reassured. Then, when you’re on your own again, the confusion, pain, anxiety and memory problems return. The support needs that were never mentioned return, and we're left with a familiar feeling: did anybody else see what I see every day?
We put a Mobilise Moment survey on this topic to our caring community in May and the response was overwhelming. Over 800 of us shared our experiences and the results revealed something that many of us instinctively knew but had perhaps never seen reflected back at us in numbers. An extraordinary 93% of those of us who responded said that the person we care for masks the reality or severity of their condition at least sometimes.
This behaviour isn't confined to one condition, one age group or one type of caring situation. We heard from carers supporting people with dementia, cancer, mental health conditions, autism, learning disabilities, chronic illness, neurological conditions and physical disabilities. The details varied, but the experience was largely similar.
That wasn’t all we found. While 93% of us said the person we care for masks their condition, 89% admitted we mask our own experiences and feelings too. What began as a conversation about people who hide their symptoms became a conversation about another of the hidden realities that exist in caring situations.
The gap between what people see and what carers know
One of the clearest themes running through the responses was the existence of two different realities. There is the version that professionals, friends and extended family members see, then there is the version that we, as carers, live with. Many of us described loved ones who seemed able to summon remarkable reserves of energy and capability for short periods of time. Some of us joked about our cared-for person being "miraculously cured" whenever they had an appointment. Others described parents who could hold themselves together for an hour with visitors before spending days recovering from the effort. One respondent summed up years of frustration in a single sentence:
"Everyone thinks she's wonderful."
Another wrote:
"I feel like people think I'm making it up."
Those comments appeared in different forms throughout the survey. Carers repeatedly described the experience of knowing that other people were reaching conclusions based on snapshots, and we alone are living with the full picture. What's striking is that most respondents didn't express anger towards the person doing the masking. If anything, the opposite was true. Many showed enormous empathy and understanding.
People mask for all sorts of reasons. Some are frightened of losing independence. Some don't want to burden family members. Some are trying to protect their dignity. Some are in denial. Some genuinely don't recognise the extent of their difficulties. Others simply want a break from being defined by their illness or condition. One carer described their relative as wanting "just one conversation where they aren't treated as a patient." And can we blame them?
Most of us have, at some point, answered "I'm fine" when we weren't. Most of us understand the desire to present our best selves to the world. The difficulty is that the reality doesn't disappear when it's hidden - someone still has to carry it.
Becoming the ‘keeper of reality’
Reading through hundreds of responses, a phrase kept coming to mind: “the keeper of reality”. When somebody masks successfully, the practical consequences don't vanish. The medication still has to be managed. The appointments still have to be organised. The risks still have to be monitored. The support still has to be provided. The difference is that much of this work becomes invisible.
Many of us described feeling as though we had become custodians of information that nobody else possessed. We know which symptoms have worsened, which incidents have occurred, how much support is being provided behind the scenes and how difficult things really are at home. That knowledge can be lonely, not because we are necessarily physically isolated, although many of us are. Rather, it is the loneliness of holding information that other people either don't have or don't fully believe.
Several respondents described situations where professionals appeared to place greater weight on a twenty-minute appointment than on months or years of lived experience. Some of us worried that family members thought we were exaggerating. The emotional impact of this on carers shouldn't be underestimated because being seen and believed matters. Nobody wants to feel dismissed.
It also matters practically because support systems are often built around perceived need. When need is hidden, support can be delayed, reduced or withheld altogether. The Mobilise Moment repeatedly highlighted a painful paradox: the more successfully somebody masks, the harder it can be for carers to access help.
When masking becomes dangerous
For many carers, masking is frustrating. But, for some, it can also have more serious consequences. A recent discussion on a thread in the Mobilise Hub explored this within the context of mental health services. A Mobiliser described caring for her adult son, who experiences severe paranoia and mental illness. She wrote:
"When they saw him he said he was fine, box-ticked and he is discharged. Comes home and tells me I am a Chinese spy and have been drugged."
The contrast between professional assessments and lived reality could hardly have been more stark. The carer went on to describe repeated attempts to explain to healthcare professionals what was happening at home, including police involvement following incidents in the community. Yet, she also felt that her concerns carried less weight than brief interactions where her son presented as well. One sentence in particular captures the distress many carers expressed throughout the survey:
"The Police are always brilliant and make me feel listened to but the mental health professionals make me feel like I have Munchausen’s."
That comment resonated strongly with other carers. One respondent replied:
"I'm a mental health nurse and honestly if I can't get through to so-called professionals, what hope do most have?"
Another contributor offered an important perspective from the other side of the experience:
"I managed to fool the system a few times. It wasn’t until my peer support/ counsellor spoke to them that they realised what I was doing."
What makes these comments powerful is that they reveal how convincing masking can be. The issue isn't necessarily that professionals aren't listening. They are often working within systems that rely heavily on what they can observe during brief interactions. The problem is that those interactions may not reveal what life is actually like the other 99% of the time.
For those of us supporting somebody whose condition fluctuates, whose insight is limited or whose difficulties emerge primarily at home, that gap can become enormous. The result can be delayed support, missed opportunities for intervention and an increasing sense of desperation for the ones carrying responsibility behind the scenes.
The hidden labour that nobody sees
One aspect of masking that was flagged repeatedly was the amount of work we undertake simply to maintain the appearance that everything is okay. Many of us described preparing extensively before social events, appointments or family gatherings. We remind people about medication, help with personal care, manage schedules, reduce stressors and anticipate potential problems. Then the event itself appears effortless. Outside observers saw somebody who looked independent, but didn't see the hours of work that had made that possible.
This is one of the less discussed aspects of caring. Support often becomes invisible precisely because it is effective. A person attends an appointment looking well-presented and organised. What's unseen is the carer who spent hours helping them prepare. Somebody might appear socially confident during a visit, but nobody sees the exhaustion, confusion or distress that follows afterwards. The better we are at supporting somebody, the easier it can be for outsiders to underestimate how much support is actually being provided. This creates a strange dynamic where successful caring can sometimes make caring itself less visible.
Then we discovered carers are masking too…
If our survey had only found that people receiving care often mask their difficulties, that would have been interesting enough but the finding that almost 90% of carers also mask their own experiences changes the picture a little. It becomes a story built around mutual protection in a caring situation. Many of us reported minimising how difficult things are:
We tell friends we're coping.
We avoid discussing burnout.
We downplay stress.
We hide loneliness.
We carry on.
One respondent described always being the "strong one." Another admitted that after years of caring they had become so accustomed to saying they were fine that they no longer knew how to answer honestly. The reasons were familiar:
Some of us didn't want to burden others.
Some of us felt guilty complaining.
Some of us were worried we would be judged.
Some simply felt that nobody would understand.
The result is what might be called a "cycle of invisibility", where the person receiving care hides the reality of their condition and we, as carers, hide the reality of caring. Friends, relatives and professionals see a version of events that appears manageable, but everyone involved may be struggling far more than anyone realises.
What can we do when masking gets in the way?
The main question which emerged from the survey was whether anything can realistically be done about masking, and the answer is complicated. Masking isn't always harmful and sometimes it helps people preserve dignity, maintain independence and engage with the world on their own terms.
The goal shouldn't necessarily be to eliminate masking altogether. The challenge arises when masking prevents people from receiving the support they need or leaves us carrying an unsustainable burden alone. Here are some suggested ways to help manage masking and make sure we aren’t shouldering the burden along:
1. Document the reality
Many of us described the difficulty of communicating months of lived experience during one short appointment. Professionals may only see a snapshot but carers see the whole ‘film’ including the ‘bloopers reel’. Keeping notes about symptoms, incidents, sleep patterns, medication issues, falls, behavioural changes or other concerns can help bridge that gap.
Several carers in the Hub talked about keeping records or examples that helped demonstrate what was happening between appointments. A diary is not about building a case against the person we care for. It is about providing context.
2. Share information outside appointments
One challenge we frequently face is not wanting to contradict someone we care for in front of professionals. Many of us described finding alternative ways to communicate concerns. Some of us send emails before meetings. Others request follow-up conversations. Some provide written information that could be considered alongside what happened during appointments. These approaches can be particularly valuable when somebody has limited insight into their condition or is unintentionally presenting a misleading picture of daily life.
3. Ask for support in your own right
Our survey suggests that we are often so focused on the needs of the person we support that our own needs disappear from view, which is a common recurring theme within our community. Carers' assessments, support groups and peer communities exist for a reason. Our GP, local council or local carer support service might be able to help if this is a frequent issue, or the Mobilise Hub is always open for you to reach out.
The finding that 89% of carers mask their own feelings should encourage all of us to pause and consider whether we are doing the same. We often find ourselves saying that support doesn't have to mean reaching crisis point before asking for help - perhaps sometimes this simply means finding a place where we can speak honestly.
4. Remember that lived experience is expertise
Perhaps the strongest message from the survey is that our observations matter. We see what happens after appointments, we see the consequences of pushing through symptoms, and we know how much support is required to create the appearance of independence.
Our knowledge is not anecdotal - it’s expertise. Healthcare professionals bring clinical knowledge. Social workers bring professional expertise. Carers bring context. The best outcomes happen when all three are valued and it is not unreasonable to remind others of this.
5. Find a safe space where you can unmask
The simplest solution may also be the most difficult. Many of us need more opportunities to tell the truth, not just about the practical help we need, but also about what caring actually feels like:
Fear.
Exhaustion.
Guilt.
Grief.
Love.
Frustration.
Responsibility.
Our discussion thread offered a small but telling example. After sharing her experiences, the mother caring for her son later wrote:
"I've had my rant now, so feel as though I've offloaded which really helps."
Her circumstances hadn't changed, but what had changed was that other carers listened and “got it” and sometimes that matters more than we realise.
What this survey tells us
93% per cent of respondents said the person we care for masks their condition at least sometimes and 89% said we mask our own experiences too. Taken together, those findings suggest that masking isn't an occasional feature of caring - it’s woven into the fabric of most caring situations. Yet, the comments behind the statistics tell an even richer story. They reveal that we, and the people we care for, are trying to balance honesty with dignity and preserve independence in the face of illness or disability. Most of all, however, they reveal how common it is to feel like we are the only person who knows what's really going on.
If there is one lesson to take, it’s that carers need to be heard as witnesses to reality - not because the person they care for is wrong, but because our perspective captures a different part of the picture. When that perspective is missing, important things can be overlooked. The challenge for all of us is not to force every hidden thought into the open. Rather, it is to create more places where honesty feels possible and where neither carers nor the people we support feel we have to carry reality alone. Because, while caring often involves holding difficult truths, none of us should have to hold them entirely by ourselves.
