When I was a young man, I genuinely believed that I thrived on stress. I spent many years in management, where pressure, deadlines and problems requiring immediate answers were simply part of the job.

I didn’t necessarily enjoy every stressful situation, but I became accustomed to dealing with them. Stress was something to overcome, work through and then move on from.

Then multiple sclerosis decided to move in.

My opinion changed.

I have come to realise that the Hidden Stress of Living with MS isn’t always the sort of stress that announces itself with worry, panic or a thumping heart. Sometimes I don’t recognise it at all until the event is over.

That’s when MS presents me with the bill.

My understanding of stress has changed considerably during my life living with MS journey. These days, I am much more interested in what an experience takes out of me than whether I consciously felt stressed while it was happening.

When Stress Doesn’t Feel Like Stress

Stress and anxiety are often spoken about as though they were interchangeable. They certainly overlap, but I find it useful to make a distinction.

The American Psychological Association explains the difference between stress and anxiety</a>, including how stress commonly has an identifiable external cause while anxiety can persist without an immediate threat.

For me, however, there is another complication.

I can experience a situation without consciously thinking, This is stressful.

Nevertheless, my body seems to have been keeping score.

I may discover several hours later that an apparently ordinary experience has taken far more out of me than I realised. Recognising hidden stress and fatigue in MS has therefore become less about identifying a feeling at the time and more about noticing what happens afterwards.

My First Encounter With Stress and MS

One of my earliest lessons about stress and multiple sclerosis actually came from somebody else.

My wife and I were travelling to Mallorca when we met another couple at Palma airport. The man caught my attention because he was walking with axillary crutches.

Naturally, I asked what had happened.

His wife explained that her husband had multiple sclerosis and that they were heading to Santa Ponsa for some sunshine and relaxation.

By coincidence, so were we.

I introduced myself and asked the husband where they were staying.

He didn’t know.

In fact, he knew almost nothing about their travel arrangements. His wife had organised the entire holiday so that he didn’t have to concern himself with flights, accommodation or any of the other details.

At the time, I found this fascinating.

Planning a holiday was something I would normally regard as part of the enjoyment. Yet there are dozens of small decisions involved in getting from your own front door to a hotel room in another country.

Perhaps his wife understood something that I had yet to learn.

Stress doesn’t have to involve a crisis. Sometimes it can simply be the accumulated effort involved in making everything work.

The Hidden Stress of a Hospital Appointment

Many years later, a hospital appointment demonstrated the same idea far more dramatically.

I had been referred to a urology clinic. I no longer remember exactly why, although bladder difficulties have certainly been part of my experience of MS.

I arrived at the clinic, was instructed to undress and put on a hospital gown.

So far, so good.

Then I waited.

And waited.

Eventually, I was called through to see the urologist.

I won’t dwell unnecessarily on the details, but the examination involved passing a camera through my urethra and into my bladder. I could actually watch proceedings on a monitor. The bladder could also be expanded with water while the examination was carried out.

It wasn’t my idea of a fun afternoon, but I don’t remember being frightened or thinking that I was particularly stressed.

The appointment finished. My wife collected me, and we headed home.

As far as I was concerned, that was that.

Except it wasn’t.

The Unseen Demands of Everyday Life With MS

During the journey home, I began to feel peculiar.

I wasn’t ill. Nor was I in any particular pain. Instead, I felt strangely detached, almost as though I were observing myself from somewhere outside my own body.

It wasn’t what I would describe as an out-of-body experience. It was simply an odd sense of disconnection.

By the time we reached home, I began to understand what was happening.

I was exhausted.

I walked into the house, sat down on the sofa and stayed there. For the rest of the day, I could barely summon the energy to move.

Only afterwards did the penny drop.

What I had regarded as a relatively uneventful hospital visit had taken far more out of me than I had realised.

When the Body Presents the Bill

That hospital visit became one of my clearest examples of physical and mental exhaustion after stressful situations.

My mind hadn’t necessarily registered the appointment as stressful.

My body had.

That experience changed the way I thought about stress because it made me question my old assumption that I would always know when I was under pressure.

Looking back over my life with MS, there have been many occasions when the aftermath has told me more than the event itself. That is particularly relevant when fatigue is already part of the picture.

The idea of limited energy is one reason I find the meaning behind the term Spoonie useful. It gives us a simple way of describing something that can otherwise be remarkably difficult to explain: ordinary activities still require energy, even when they don’t look particularly demanding.

And the cost isn’t always obvious until later.

Everyday Activities Can Carry a Hidden Cost

There are obvious sources of stress in life. Bereavement, financial worries, relationship difficulties and major health concerns don’t require much explanation.

But everyday activities that cause stress with multiple sclerosis can be much less dramatic.

A trip into town, for example, can involve thinking about parking, toilets, walking distance, fatigue and whether there will be somewhere to sit down.

Even going somewhere enjoyable can involve calculations that other people may never have to make.

Do I have enough energy?

How far will I have to walk?

Will it be too warm?

Where is the nearest toilet?

How long will I be there?

And perhaps the most important question of all:

How much will this cost me afterwards?

Temperature is another consideration I have learned to make because of my own heat sensitivity in MS. Something as ordinary as a warm room can therefore become another factor in deciding how demanding an outing might be.

I don’t necessarily sit down and consciously worry about all these things. Much of the calculation happens almost automatically.

But automatic doesn’t mean effortless.

These are some of the unseen demands of everyday life with MS.

Even a Pleasant Afternoon Can Take Its Toll

A recent family visit brought this home again.

My father and stepmother came to see us. I always enjoy seeing them, and this occasion was no different.

We spent a wonderful afternoon catching up with all the family goings-on.

There was no argument.

No bad news.

No medical procedure.

Nothing went wrong.

It was simply a lovely afternoon spent with people I was pleased to see.

Then they left.

Only afterwards did I become aware of just how tired I had become.

That may sound contradictory. How could an enjoyable afternoon be stressful?

But I think that’s precisely the point.

Something doesn’t have to be unpleasant to require effort. Conversation requires concentration. Socialising requires engagement. Following different strands of conversation requires mental energy.

The enjoyment was genuine.

So was the exhaustion.

One does not cancel out the other.

That distinction matters to me because I don’t want MS to turn life into an exercise in avoiding anything that might leave me tired. I would rather understand the cost and allow for it afterwards.

Learning to Recognise Hidden Stress

This is where my understanding of stress has changed most over the years.

Once, I thought stress was something I would obviously recognise. I would know I was stressed because I felt under pressure.

Living with MS has taught me that this isn’t necessarily true.

Sometimes the first indication is what happens afterwards. I might become overwhelmingly tired. My concentration may disappear. I may simply need to sit quietly and do absolutely nothing for a while.

The temptation is to wonder why.

I’ve hardly done anything.

Except perhaps I have.

The effort simply wasn’t visible.

Recognising the Aftermath and Allowing for Recovery

Recognising that hidden expenditure has made me more conscious of what I do before and after demanding days.

I don’t regard that as surrendering to MS. Quite the opposite. It helps me decide which things are worth spending my energy on.

I have written elsewhere about what happens before my MS diagnosis and the signs I only recognised later. There is a similar element of hindsight here. Sometimes an experience makes more sense when I look backwards at what happened afterwards.

I also find that having a quieter end to the day helps me draw a line under whatever the day has demanded. My evening rituals aren’t about trying to create a perfect routine. They simply give me an opportunity to slow things down.

That doesn’t mean avoiding everything that might be tiring.

If I did that, I wouldn’t have much of a life.

Family visits, holidays, conversations and days out are part of living. I don’t want to remove them merely because they may have an energy cost.

The Hidden Stress of Living with MS Has Changed My Thinking

The younger version of me probably would have regarded stress as something to conquer.

Perhaps that attitude served me well during my working life.

Today, I look at it differently.

I don’t believe the answer to the Hidden Stress of Living with MS is to remove every possible source of stress from my life. I’m not even sure that would be possible.

Instead, I try to recognise that my resources aren’t unlimited.

Sometimes I know beforehand that something will be demanding. Sometimes, as happened after my hospital appointment, I only discover it afterwards. And sometimes I can have a thoroughly enjoyable afternoon before MS quietly reminds me that enjoyment still requires energy.

Understanding this has become another part of recognising my wider MS Symptoms and how they affect everyday life.

I no longer judge an activity solely by whether it felt stressful at the time. I pay more attention to what my body tells me afterwards.

That may be the most useful lesson I’ve learned about stress since my diagnosis:

Conclusion: Living with the Hidden Stress of MS

The Hidden Stress of Living with MS is not always obvious, even to those closest to us. Recognising hidden stress and fatigue in MS has helped me understand why seemingly ordinary tasks can sometimes feel overwhelming. There are countless everyday activities that cause stress with multiple sclerosis, often leaving us dealing with physical and mental exhaustion after stressful situations.

These are the unseen demands of everyday life with MS, and acknowledging them is an important part of learning to adapt. I have come to realise that managing stress is not about eliminating every difficulty, but about recognising my limitations, making sensible adjustments and accepting that some days will be harder than others. After all, living positively with MS doesn’t mean pretending that the challenges don’t exist.

Not every exhausting experience is unpleasant, and not every stressful experience feels stressful at the time.