White Coat Syndrome

⚠️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being. ⚠️

please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it

For a few days before the MRI, I had what I call white coat syndrome. Properly speaking, white coat hypertension is when your blood pressure shoots up around doctors, hospitals and anything wearing a lanyard. What I had was the whole rotten family: medical anxiety, claustrophobia, bad dreams, nerves buzzing, bladder acting like it had joined the resistance, and a head already planning its escape route.

I kept saying I was fine. Of course I did. When Albertine asked how I felt about going for the MRI, I said, “Everything is okay. I’m fine.”

That was bollocks.

What she did not know at first was that I had been having horrible dreams about the MRI machine. That white, soulless tube. The tube I hate going into because I hate enclosed spaces. For several days before Sunday, it was living rent-free in my head.

With MS, stress is not just a thought. It gets into your body. The fatigue gets louder, the nerve feelings get weirder, the bladder gets more urgent, sleep goes to hell and your brain starts behaving as if it has been left out in the rain with the lid off. You can feel like you are preparing for a minor medical appointment while your body has decided it is the final scene of a disaster film.

Monday morning, as I write this, I am definitely not back to any sort of normal — which, with MS, is a fairly flexible concept anyway. The drive had sapped every last bit of energy from me. Then, about an hour and a half or two hours after getting home, everything kicked in. I felt strange. My head felt like it was on another planet. It is hard to explain, but it is one of those horrible MS feelings where you know you are not right, yet you cannot put it neatly into words for somebody who has never lived in a body with faulty wiring.

The MRI itself was not exactly a spa day.

I was lying on a platform with my head wedged into a restraint of some sort. Then they put the mask over my face. I asked what it was, and the chap told me it helped with the scan.

Helpful. Lovely. Grand.

The moment that thing went over my face, My Living Hell properly began.

It was the sudden enclosure. That instant feeling of, “Oh God. Oh dear.” My body started reacting badly. Bear in mind, I do not like enclosed spaces at the best of times. He told me that if I had any problems, no matter what, I should give them a shout.

Well, that was reassuring.

I had written on the form, in big letters, that I suffer with white coat syndrome and that I have a fear of enclosed spaces. They asked me what white coat syndrome was. I suspect “my body panics around medical stuff because life has repeatedly given it excellent reasons to” may have been too long for the form.

Then I was sent up the tube with a little alarm ball in my hand. I was told to press it if I felt weird.

As soon as I went in, blind panic arrived like it had been booked in for the same appointment.

How the hell do I get out of here if something goes wrong?

That was the only thought going through my mind for the first few minutes. I was looking for escape routes from a machine specifically designed not to have any. This was probably my fourth MRI, so you would think I would be used to it by now. Apparently not. Trauma does not become charming with repetition.

The machine began its full industrial-noise concert. Whirring, banging, clanking, alien drilling sounds — all loud enough to make you wonder whether NASA had accidentally built the hospital next door. I had headphones and earplugs in, supposedly to protect me from the noise. “Supposedly” is doing a great deal of work in that sentence.

I lay there holding that little ball as if it were a sacred egg and the only thing between me and a full-blown escape attempt. It was the weirdest feeling and the weirdest mindset. If you have never been through it, trust me: it is a real head fuck. No fun whatsoever.

I would rather have a lumbar puncture than an MRI.

Actually, no. I have had three lumbar punctures. They were horrendous too. So perhaps I would rather be left alone with a cup of tea and no medical equipment within a ten-mile radius.

Then, because apparently the day had not supplied enough inconvenience, I had to take my nipple rings out. Now I cannot get the damn things back in. So I will probably have to pay somebody to put them back through. What an absolute faff. Plastic bars may be the sensible answer if there is another MRI in my future, because I do not fancy yanking them out again just to visit the white tube of doom.

Sorry if that is too much information. But this is my blog. You knew what you were getting into.

Back in the scanner, the sounds carried on. My body began doing what it does: spasms in my legs, spasms in my arms. At one point they pulled me out because they could see I was in discomfort. The nice young man took the mask off, had a chat with me, and then it was back into the hole of death I went.

The descent was very slow. Even slower than my three-wheel trolley of death — otherwise known as my powerchair.

I went deeper into that white tube, still clutching the alarm ball for dear life. I saw a little red-and-white target at the end and thought, “How much longer have I got to put up with this?” I tried to tell myself not to think about what was happening. Naturally, that made me think about it even more.

It felt like an eternity.

Eventually, I was pulled back out. The staff asked whether I was okay. I said I was as well as could be expected with what was wrong with me, and I laughed a bit. Because if you cannot laugh at the absurdity of it all, you may as well scream into an MRI scanner — which, to be fair, I was considering.

Then I found myself in the lift, heading down to the ground floor, and there was my wheelchair still waiting for me. Small mercies. I was ushered through the doors and saw Albertine in the waiting room. I think I might even have smiled. I was bloody glad to be out of there.

I got back into the WAV, took a slug of water, and headed home. Thankfully, I did not take any strange directions this time. The old VW has already cost me nearly two grand in injectors this year, because apparently it too has decided to develop a chronic condition. It is over ten years old, expensive, temperamental and occasionally makes alarming noises. We have a lot in common.

Once home, I did my blog and then spent the afternoon feeling strange in my head and body. Still do, if I am honest. That is MS for you: a medical ordeal can finish, but the body does not always get the memo.

So that was my MRI experience: the white tube, the noise, the mask, the spasms, the panic, the tiny alarm ball and the overwhelming desire to be anywhere else on Earth.

To anyone facing an MRI while living with MS, anxiety, claustrophobia or all three: you are not weak, dramatic or making a fuss. Your body is reacting to something it finds frightening. Tell the staff. Ask questions. Ask for breaks if you need them. Hold the bloody ball if it helps.

And if you get through it, you have earned a very large cup of tea — or whatever gets you safely back into the land of the living.

Peace, healing, love and light to everyone reading this. Have the best week you can manage. The cold weather is coming, so get the blankets and warm stuff early, before the shops decide they have vanished into the same dimension as common sense.

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)
☣ This Is Not A Blog About MS This Is My Life With MS ☣

Tumblr is @livingwithmsblog twitter@livingwithms 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being.⚠️

please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it

Sunday morning. Rain hammering down. The sort of day that makes you want to pull the curtains, swear at the weather and pretend civilisation has been cancelled.

Instead, I had a two-hour round trip to the hospital for an MRI.

Luxury.

White coat syndrome had already arrived the night before, naturally. It does not knock politely. It climbs into bed with you, starts rattling your nervous system and whispers, “Remember tomorrow? Let’s make that worse.”

Just as I was trying to sleep, my throat began spasming. Every few minutes. For about an hour. Nothing says restful bedtime quite like feeling your body has decided to audition for a low-budget horror film.

Eventually I took a Lorazepam because the brain was doing its usual hamster-on-a-wheel routine. Still woke up around four or five in the morning, in pain, with the day ahead already stomping about in my head wearing steel-capped boots.

Then, because life enjoys an encore, we found the van had a puncture.

Of course it did.

Pump up the tyre, get in the van, head into the city in Sunday rain. I had hoped to see the grandchildren afterwards, but they all had colds, so that plan got knocked firmly on the head. Probably for the best. Passing germs around is not really the family pastime anyone needs.

Travelling with MS is not simply “getting in a car.” It is an expedition. Even when you are not driving, it drains you. When you are driving, and cannot take your usual medication because you need to be safe behind the wheel, it becomes a special kind of rubbish.

From roughly seven in the morning until about three in the afternoon: medication-free. Brilliant. My nervous system was no doubt thrilled.

There have been plenty of times I have thought about handing in my licence. Saying enough is enough. But at the moment, I cannot. So I carry on. That is often the reality of disability: not heroic nonsense, not inspirational poster material — just doing the difficult thing because the alternatives are worse.

White coat syndrome did not appear from thin air

Mine goes back decades.

As a kid in the 1960s, I was taken to a dentist who seemed to have been built in the Victorian era and left in storage since 1700. Cobwebs, grim mood, no patience, and drills that looked like they belonged on a building site.

You did not get soothing words. You got pushed through the door, sat in the chair and told to shut up. My mother did not understand the terror, and neither did the dentist. That feeling sticks with you. Your body remembers even when your brain thinks it has moved on.

Oddly, MS has removed my dentist anxiety now, partly because my mouth is numb and fillings often do not hurt. Every cloud and all that.

The downside is biting chunks out of your tongue, dribbling when drinking and trying to eat with a mouth that has the sensitivity of an old sofa cushion. It is not glamorous. MS rarely is.

The MRI experience:

surprisingly decent staff, deeply unpleasant tube

The journey in was not too bad until we hit the city. Then it became chock-a-block, because apparently everyone else had chosen the same rainy Sunday to clog up the roads.

I took a wrong turn, got confused and added another twenty minutes. We arrived about half an hour early, and — shockingly — I was seen fifteen minutes early. The staff were kind and seemed to know what they were doing.

On the form, I wrote: “I have white coat syndrome.”

They asked what it was.

I laughed.

I also explained that confined spaces are not my idea of a good time. They gave me that familiar look: half reassurance, half “we have heard this before.” Then came the MRI.

About halfway through, I started feeling sick. My nerves were spasming all over. The face mask was making my breathing feel worse, and with the throat-strangling sensation I already get, being strapped into a metal machine with my head held in place was not exactly a spa afternoon.

They stopped the scan briefly and took the mask off. Thank God for that.

I was in there for somewhere between half an hour and three quarters of an hour. Not the worst thing I have ever endured, but nobody should pretend it is pleasant when your body is already on high alert.

People sometimes wonder why medical appointments can knock someone with MS sideways for days.

There it is.

The travel. The disrupted medication. The pain. The anxiety. The sensory overload. The waiting. The physical effort. The fear. The concentration. The fact that you have to keep performing “coping” while your body is quietly filing a formal complaint.

And then people say, “But it was only an appointment.”

Yes. Only an appointment. Like climbing Everest is only a walk.

Home, exhausted, and waiting

The trip home was fairly pleasant apart from the usual road warriors in their giant fast cars, overtaking because apparently arriving thirty seconds sooner is a sacred mission.

I got home less stressed, absolutely shattered, and ready to take my medication, eat dinner and collapse into bed.

I am glad hospitals are able to offer MRI appointments on a Sunday. Honestly, more services should be available around the clock. Illness does not close for weekends, bank holidays or staff rota convenience. Bodies have appalling manners like that.

I do not know what the MRI will show. I know how I feel, I know I have been getting worse, and I know I have spent years telling people what has been happening to me. The wait for answers is its own kind of torture.

For years, I was left trying to make sense of symptoms that were written off, missed or simply unexplained. The MS hug. The pain. The breathing and throat symptoms. The sheer madness of trying to explain what is happening inside a body that no longer follows the rules.

Too often, people with MS are sent off to navigate a minefield with a leaflet and a polite smile.

That is not good enough.

Anyway. MRI done. Rain survived. Tyre pumped up. Nervous system thoroughly offended.

Now for a long afternoon in bed, medication, food and the hope that tomorrow is less of a circus.

Peace, healing, love and light to everyone still battling their own ridiculous body, their own hospital maze, or their own Sunday from hell.

Keep your stress down where you can. Smile if you feel like it.

And stay safe, stay well.

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

Tumblr is @livingwithmsblog twitter@livingwithms 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

It’s Thursday. The sun is out, probably warmer than my place, which is basically an icebox. Today’s forecast? Existential dread with a chance of mild joy.

This morning, the doctor rang me for my phone appointment. Absolute legend. Actually made me feel less like a human pincushion, which is impressive because I have severe white coat syndrome. Since moving here, local doctors are… shockingly decent. no Plumbstick, it’s almost unsettling.

Then came the highlight of my day: the “machine of death” at the chemist. It always malfunctions like it has a personal vendetta against me. But today? Today I smiled through the existential horror.

Yopi, my alpha Blueblood American Bulldog, was serene like she’d transcended this mortal coil. She hopped into the back of Rusty 1, strapped in like a responsible adult (she’s better at this than me), and off we went. The warmth of the day made me momentarily forget I’m a failing meat suit with MS. Dogs are magical that way. Stroke a dog’s chin and suddenly the chronic pain fades to background noise… until reality slaps you in the face again.

Speaking of slaps: my head feels… weird. Not foggy, just like some cosmic veil is tugging me toward a place free of pain. Somewhere better. Warmer. Definitely less human. My spiritual side is currently a maze, confusing me, mocking me, asking, “Who even are you?” Just a random meat suit with MS, apparently.

I put on The Eagles and let the memories flood in. Nostalgia is a cruel friend reminds you what you’ve lost while your limbs stage a protest.

We drove to the chemist. Thrilling stuff. All normal, boring, mundanely tragic but Yopi enjoyed it. Sometimes I wish I were a dog. Carefree. Oblivious. Immortal in joy.

Yes, that’s Thursday. Survived. Somehow.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ