You know something isn’t right.

You know your body. You know what normal feels like for you. And yet you’ve left an appointment wondering whether you’re overreacting, imagining things or simply not explaining yourself well enough.

If you’ve experienced that, you’re not alone.

For people living with chronic illness, particularly conditions that are complex, fluctuating or difficult to diagnose – feeling dismissed by healthcare professionals can become another exhausting part of an already difficult experience.

There’s a name for it: medical gaslighting.

What is medical gaslighting?

Medical gaslighting is a term used to describe situations where someone’s symptoms or
concerns are dismissed, minimised or attributed to something else without being properly
explored.
It might sound like:
“It’s probably just stress.”
“Your tests are normal, so there’s nothing to worry about.”
“You’re too young to have that.”
Or, as one doctor said to me when I was struggling with symptoms:
“Book a holiday.”
I remember that one.
Because when you know something is wrong with your body, being told to book a holiday
doesn’t reassure you. It makes you question yourself.
Maybe I am just tired.
Maybe I am stressed.
Maybe I’m making too much of this.
Periodically throughout my chronic illness journey, I genuinely felt like I was going mad, as it
turned out, I was right to trust my instinct…
Now, it’s important to say that not every disagreement with a healthcare professional is
medical gaslighting. Doctors don’t always have immediate answers, tests have limitations,
and symptoms can overlap across many different conditions.
But there’s a difference between not having an answer and making someone feel that their
experience doesn’t matter.

The problem when you’re told you’re fine – but you don’t feel fine

One of the most difficult parts of living with chronic illness can be the gap between what
you’re being told and what you’re actually experiencing.
A normal test result can be reassuring.
But it doesn’t automatically mean that the symptoms you’re experiencing aren’t real.
When you’re already dealing with fatigue, pain, brain fog, balance issues, weakness or other
symptoms, having to repeatedly explain and justify how unwell you feel can be exhausting.
And after a while, something else can start happening.
You begin questioning yourself.
Maybe I am making too much of this.
Maybe everyone feels like this.
Maybe I just need to push through.
That loss of trust in yourself can be incredibly difficult.
And that’s why I think it’s so important to keep listening to your body.

I knew something still didn’t add up

This is something I understand personally.
I was diagnosed with Long COVID.
It wasn’t that I was unhappy with the diagnosis itself or that I decided the doctors must be
wrong. I just wasn’t convinced that Long COVID explained everything that was happening to
me.
Something didn’t feel right.
So I kept advocating for myself.
I saw a rheumatologist, who also felt that Long COVID was the explanation.
But I still wasn’t convinced.
I continued listening to my symptoms and eventually saw a neurologist. That led to further
investigation and a diagnosis of cervical myelopathy — compression of the spinal cord in
my neck.
Ultimately, I needed surgery.
My medical records now contain both diagnoses: Long COVID and cervical myelopathy.
Do I have both?
Were some of the symptoms I thought were Long COVID actually caused by the cervical
myelopathy?
Was it a combination of the two?
I don’t know. And I guess I may never know.
What I do know is that if I hadn’t followed my gut and continued advocating for myself, I
wouldn’t have received the cervical myelopathy diagnosis when I did.

I wouldn’t have had the surgery I needed.
And hopefully, I’m now on the road to recovery because I kept asking questions.
That’s why I feel so strongly about this.

Listening to your body isn’t the same as diagnosing yourself.

You can respect medical expertise while still saying:
“I understand what you’re telling me, but I still don’t feel that this explains what I’m
experiencing.”
Those two things can exist at the same time.

How to advocate for yourself at medical appointments

Self-advocacy doesn’t mean becoming confrontational or walking into an appointment
convinced you know what your diagnosis is.
It means recognising that you are an important part of the conversation about your own
health.
There are some simple things that can help.

Write things down beforehand

Brain fog, anxiety, fatigue – or simply the pressure of a ten-minute appointment – can make it
surprisingly difficult to remember everything you wanted to say.
Before your appointment, jot down:
 your main symptoms
 when they started
 whether they’ve changed or progressed
 anything that makes them better or worse
 how they’re affecting your day-to-day life
 the questions you want answered
Try to explain the impact, not just the symptom.
Instead of simply saying “I’m tired”, explaining what that tiredness means in real life can give
a much clearer picture.
What can you no longer do that you could do before?
What has changed?
That’s useful information.

Keep a record of changes

When you’ve been unwell for months or years, it can become surprisingly difficult to
remember exactly when something started.

Keeping brief notes can help you spot changes and give healthcare professionals a clearer
picture.
It doesn’t need to become another full-time job.
Dates, symptoms and significant changes can be enough. I found that keeping a journal by
voice-noting everything to AI worked for me.

Ask what happens next

If you’ve had tests but your symptoms are continuing, it’s reasonable to ask:
“What is the next step if this doesn’t improve?”
Or:
“What else could be causing these symptoms?”
Or even.
“I understand why you think this is X, but what would make us reconsider that
diagnosis?”
You’re not challenging someone’s expertise by asking questions.
You’re trying to understand your own health.

Ask for clarification

Medical appointments can move quickly, and it can be difficult to process information on the
spot.
If you don’t understand something, ask.
If you’re told something isn’t concerning, you can ask why.
If a referral or investigation isn’t being considered, you can ask what has led to that decision.
You don’t need medical knowledge to ask questions about your own care.

Take someone with you

If possible, take someone you trust to important appointments.
When you’re tired, worried or overwhelmed, you don’t always hear or remember everything
that’s said.
Another person can listen, take notes, remind you of something you wanted to mention and
sometimes give you the confidence to say:
“Actually, there’s something else I need to ask.”

And yes, going private can be an option

We also need to be realistic about healthcare and waiting times.
If you’re waiting months to see a specialist while you’re experiencing symptoms that are
having a significant impact on your life, that can be incredibly frustrating.
If it’s affordable for you, or you have private medical insurance – paying for a private
consultation is an option worth considering.

I appreciate that’s not financially possible for everybody, and I would never suggest that it is.
And going private doesn’t guarantee you’ll get a different answer.
I know that firsthand. I sought another opinion and the rheumatologist still agreed with the
Long COVID diagnosis.
But private healthcare can sometimes give you quicker access to a specialist or another
opinion, which may help you explore persistent symptoms further.
If it isn’t affordable, don’t assume you’ve reached the end of the road. You can go back to
your GP. You can explain what’s changed. You can ask what other NHS referrals or
investigations might be appropriate.

You are allowed to go back.

You are allowed to say, “This is still happening.”
You are allowed to ask, “What do we do next?”

Trust what you’re experiencing

This doesn’t mean assuming every symptom means something serious.
It doesn’t mean Googling symptoms until you’ve diagnosed yourself with seventeen different
conditions.
And it doesn’t mean that a healthcare professional who disagrees with you isn’t listening.
It simply means recognising that your experience matters.
You live in your body every day.
If something has changed significantly, you’re allowed to say so.
If your symptoms are affecting your ability to work, parent, socialise, exercise, think clearly or
simply get through an ordinary day, that’s relevant.
Don’t underestimate the value of saying:
“This isn’t normal for me.”

What if you’ve started doubting yourself?

This is the part we don’t talk about enough.
After months or years of appointments, investigations, waiting lists and unexplained
symptoms, you can start losing confidence in your own judgement.
You can become anxious before appointments.
You might rehearse what you’re going to say because you’re worried you won’t explain
yourself properly.
You might stop asking questions because you don’t want to be labelled difficult.
You may even delay seeking help because previous experiences have made you think,
What’s the point?
And somewhere amongst all of that, you can lose a little bit of trust in yourself.

Chronic illness can already change your relationship with your body. Feeling unheard can
make that even harder.

There comes a point when the question changes

Medical professionals have an essential role in investigating, diagnosing and treating illness.
Keep asking the medical questions when you need to.
But there’s another question that often gets much less attention.

How do I actually live my life now?

How do I trust myself again?
How do I rebuild confidence?
How do I make plans when I don’t know how I’m going to feel?
How do I stop measuring myself against the person I was before I became ill?
How do I move forward without pretending none of this happened?
Those aren’t necessarily medical questions.
But they’re incredibly important ones.
And they’re often the questions that remain long after you’ve left the consultation room.

You don’t need to have everything figured out

Living with chronic illness can involve a lot of uncertainty.
I know that personally.
I still have two diagnoses on my medical records and questions I may never have definitive
answers to.
But I’ve learned something important from the experience.

You can accept the information you’re being given while still listening to yourself.

You can ask another question.
You can seek another opinion.
You can say something still doesn’t feel right.
And you can advocate for yourself without feeling guilty for doing it.
Moving forward isn’t about pretending everything is fine.
It isn’t about forcing yourself to be positive.
And it certainly isn’t about simply booking a holiday.
It’s about understanding where you are now, trusting yourself again and finding a way
forward that works for you.
That’s exactly the kind of work we do at Plan B Coaching®.
If chronic illness has changed your life and you’re trying to work out what comes next, you
don’t need to arrive with a perfect plan.

Sometimes the first step is simply having a conversation.
Book a free Clarity Call with Plan B Coaching® and let’s talk about where you are now –
and where you’d like to go next.