Nicola Elliott
An invisible illness can be a cruel old trickster. One day, a person may look steady enough to tackle the stairs, answer emails and smile through lunch. The next, their body can feel as though it has been hit by a bus driven by inflammation, fatigue and pain. In the UK, autoimmune diseases affect around one in ten people, yet for something so common, they remain remarkably misunderstood.
That misunderstanding is exactly what NHS GP Dr Punam Krishan is trying to tackle. Working alongside stairlift and home lift brand Stannah, she is drawing attention to one of the most frustrating realities of autoimmune disease: symptoms rarely move in a straight line. They ebb, they flow, they flare, they vanish, and then they return just when life looked manageable again.
With more than 80 conditions sitting under the autoimmune umbrella, including rheumatoid arthritis, lupus and multiple sclerosis, these disorders happen when the immune system mistakes the body’s own tissue for the enemy. The result can be inflammation, pain, exhaustion and mobility issues that affect joints, muscles, nerves and organs almost anywhere in the body.
The problem with “but you looked fine yesterday”
The difficulty, of course, is that autoimmune disease often does not announce itself in obvious ways. There is no cast, no sling, no flashing warning light above someone’s head. That is why invisible illness can leave people not only unwell, but doubted.
Dr Punam explains: “To loved ones, a sudden decline in health compared to being able to function the previous day, for example, can be difficult to understand as they perceive day-to-day ability to be a choice – whereas this is entirely not the case.
“As the body perceives healthy tissue as a threat, it tries to fight off the ‘attack’ by releasing proteins which triggers swelling, pain, and fatigue as a result. Infections, hormonal shifts, disrupted sleep and stress can all cause these triggers to ramp up.
Even after this phase subsides, the underlying cause of the body perceiving its own tissue as a threat remains. This is why flares can be so unpredictable.”
That unpredictability is the real thief in the room. It steals plans, certainty, confidence and, very often, credibility. A person can appear outwardly well while privately dealing with crushing fatigue, stiff joints, muscle weakness, brain fog, digestive trouble, dizziness or feverish, flu-like symptoms.
For many, that mismatch between appearance and reality becomes one of the hardest parts of living with an autoimmune condition. Not because the symptoms are mild, but because they are so easily dismissed.
When invisible illness becomes isolating
There is something uniquely lonely about being told you look fine when you feel anything but. It is the sort of comment usually delivered without malice, yet it lands like a brick.
That is why Dr Punam is keen to spotlight the emotional burden as well as the physical one. A person dealing with autoimmune disease may be coping with pain, weakness, balance problems or exhaustion, while also feeling pressure to explain themselves over and over again.
She says: “Not only do the invisible symptoms make autoimmune conditions difficult to recognise as a loved one – they are far more difficult to manage as the person experiencing them.
“If you resonate with these symptoms but are not yet diagnosed, it’s important to validate how you feel and make the first steps to getting the medical clarification and support you need.”
That matters, especially given how long a diagnosis can take. One report found that one in three people living with rare autoimmune rheumatic diseases waited more than five years for a diagnosis. Five years is a long time to be unwell, uncertain and second-guessed.
The boom-and-bust cycle that catches so many out
If autoimmune disease had a signature trap, this might be it.
After a flare subsides, the temptation is obvious. You feel a little stronger, a little more human, and suddenly there is a backlog of life waiting on the doorstep: work, family, chores, social plans, all the bits and pieces that piled up while you were flat on the canvas. So you try to catch up. Then the body bites back.
Experts call it the boom-and-bust cycle, and it is as common as it is punishing.
Dr Punam explains: “People will try to catch up on things they’ve missed from being unwell once they’re feeling stronger, such as social plans, work and chores. However, this inevitably leads to inflammation from cortisol as a result of stress because they’ve pushed themselves too hard too quickly.”
It is easy to see why people fall into it. A good day can feel like borrowed sunshine in the middle of a long winter. Naturally, you want to stand in it for as long as you can. But with invisible illness, overdoing it today often means paying for it tomorrow.
And that, again, is where understanding from others becomes essential. “If you have a loved one with an autoimmune condition, patience, compassion and understanding is paramount. Supporting them to find ways to live with their condition and adjusting to life alongside it will feel more reassuring than trying to rally against it.
“Just because they may have been energetic and ‘symptom-free’ the day before, it doesn’t reduce the risk of debilitating pain affecting multiple areas of the body or extreme fatigue the next day.”
Three practical ways to manage autoimmune flares
Living with an autoimmune condition is rarely about grand gestures. More often, it is about small, sensible adjustments made early enough to stop a wobble becoming a collapse.
Pace the good days carefully
The first rule is not to treat a better day as a free pass.
Dr Punam says: “It’s important to avoid over-exertion even when symptoms have subsided as this can then trigger another flare-up.
“When strength and energy have returned, make sure to still provide space for regular rest breaks and maintain a steady, realistic pace for activities through the day.
“I recommend tracking your symptoms in a diary or with tracking technology, so you can recognise patterns, adapt your day-to-day routine and have accurate expectations around your energy levels.”
That is not laziness. It is strategy. People with invisible illness are often not short on grit; if anything, many have too much of it. The trick is learning that restraint can be a form of strength too.
Make the home safer and easier to navigate
When fatigue rises and pain flares, ordinary spaces can become awkward obstacle courses. A staircase is no longer just a staircase. A bathroom becomes a place where balance matters. Poor lighting becomes a genuine hazard.
Dr Punam suggests practical changes that support independence without making a home feel clinical or stripped of character. “Simple changes can help maintain your independence and deserved capability in your own space, even during a ‘bad day’.
For instance, adding grab rails in the bathroom for support and making sure the stairs are brightly lit can give you the assurance you need without significantly changing your home’s design and aesthetic.
Fatigue and some medications can affect coordination and depth perception, so the GP also recommends considering thoughtful lighting such as at the top of the stairs with the hazard risk in mind.”
It is sensible, not dramatic. Inclusive design is not surrender. It is preparation.
Speak plainly and ask for support
There is also the emotional side, which is often the one people neglect until they are running on fumes.
Dr Punam says: “Being brave enough to open conversations around symptoms, energy levels and limitations can really help you feel comfortable to ask for support when you need it.
“Regularly checking in and reminding them of the fluctuating nature of an autoimmune condition can lift the pressures you may feel to push through. Remembering to manage your condition at your own pace while speaking up on ways others can support you is key.”
“Support groups for those living with autoimmune conditions can also combat the feeling of isolation, helping you to connect with people who can understand in ways your loved ones may not be able to. It’s important to find something that works for you, whether that be in-person group sessions or online support.”
That may be the heart of it. Not stoicism. Not pretending. Not grinding on until the wheels come off. Just honesty, support and a bit of grace.
Start the conversation early
The biggest danger with invisible illness is that it can be waved away for too long, by others and sometimes by the person living with it. Symptoms become normalised. Exhaustion is shrugged off. Pain is managed around. Life narrows quietly.
Dr Punam’s advice is simple and timely: “Starting the conversation early will put you on the path to ensuring you get the support you need to manage your condition and continue to live independently.”
And that is the point, really. Autoimmune disease may be unpredictable, frustrating and too often unseen, but it should not have to be faced in silence. The body is complicated enough without the added burden of disbelief.
Sometimes the most useful thing anyone can offer is not a solution, but the willingness to understand that a person can look well and still be fighting one hell of a battle.