Why Did You Wait So Long To Seek Help?

The Hidden Cost of Trying to Get Better That Nobody Talks About

The question rang around the room. I had expected it, but when the doctor finally asked, it felt like the floor opened beneath me.

‘Why did you wait so long to seek help?’

It’s a question that touches a sore spot for every spoonie: why don’t we try harder to get better?

I’ve heard it asked me directly, but also indirectly. Friends and family hint at alternative treatments they’ve heard of, or doctors a friend of a friend once saw for answers.

The undercurrent is this: we don’t understand why you won’t seek more help.

And beneath that lies something darker: you’re not doing enough to get better, maybe you even like being sick, not having responsibilities and above all not having to work.

Deep breath, my spoonie friend. You are not alone if someone ever made you feel ashamed and guilty because of their own complete misunderstanding of what we deal with on a daily basis.

Because ‘seeking help everywhere you can’ isn’t as easy as it sounds.

Our daily baseline is low. And if we do push through, we know we’ll need days – sometimes weeks or months – to recover from the appointment and the travel it involves.

There will no doubt be follow-up appointments which means more rest days before and recovery days after, and a lot of discomfort on the days themselves. This way ‘seeking help’ becomes a full-time job we don’t so easily want to sign up for.

Then there is that other vital element: the medical world. We have been traumatised by this world, by how we were (mis)treated, disbelieved, disregarded and sent home with: ‘There’s nothing I can do for you. Learn to live with it.’ Or worse: ‘We can’t find anything wrong, so you’re not sick.’

The effects of this on our mental health cannot be overstated, and it directly affects our physical health too.

This means seeking help isn’t so straightforward for us. We will get sicker from the emotional distress and physical effort of the appointment(s) which means it may actually harm us to seek help.

And this is what many healthy people don’t understand. This is where the judgment comes from and the fundamental lack of understanding what it truly means to have chronic illness(es).

Because hoo boy, do we wish we got better. To work again. To have a social life. To feel like there’s a point to being alive at all.

Only we understand the diabolical dichotomy we exist in.

Last week, after twenty years of living with it, I finally went to see several different doctors at the migraine clinic.

I hadn’t gone sooner because the rest of my body wasn’t ready, my other illnesses weren’t ready. Not ready for the 4 hours of appointments with different specialists, not ready to face possible judgement and not ready for more medication to go into my system. Not ready for the mental and physical tax it would take.

A week on I am still in recovery mode from the appointments and have yet to see what the new medication will do. But what I know is that it has once again proven to me that seeking help is incredibly hard and even when you do, it is still incredibly hard.

Come to think of it, seeking help isn’t even a full-time job for us; it’s 24/7/365. I wouldn’t wish it on anyone, having to live our life like that.

So please, don’t judge yourself for not seeking help wherever you could find it.
Your community understands this impossible dilemma, completely.

Sandra Postma
Posted on 30 October 2025 on Substack

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