“So… What Now?” The Cruel Optimism of Diagnosis

By Antonia at Unremarkable Me – who once genuinely believed that getting a diagnosis would mean getting a solution.

There’s this story we’re all sold—the idea that once you’re diagnosed, the hard part is over.

You spend years being told it’s anxiety, that your symptoms don’t make sense, or that they’re just “part of life.” You lose track of how many doctors’ waiting rooms you’ve cried in, how many hours you've spent convincing people you're not being dramatic. But somewhere in the chaos, you build this fragile, shimmering hope that if you can just name the thing that’s wrong with you, everything else will click into place.

When I was diagnosed with Ehlers-Danlos Syndrome and Chiari Malformation, I thought I’d finally made it. This was the turning point, right? At last, the mysterious mix of pain, dizziness, weird nerve stuff, and joints behaving like circus performers had a name. I expected a plan. A coordinated team. A moment of relief, even.

What I got was a printout, a knowing look, and the distinct feeling that the NHS had just handed me a very polite “good luck.”

Diagnosis Isn’t a Solution. It’s a Starting Point.

The diagnosis was supposed to fix something—if not my body, then at least my understanding of it. But the truth is, all it did was change the label on the chaos. Instead of “unexplained,” it became “chronic.” Instead of "maybe stress," it became "genetic disorder with no cure." And suddenly, everything I thought would get easier… didn't.

I was still in pain. Still exhausted. Still managing a laundry list of symptoms. Only now I had a name for it all—and a new sense of urgency, because I knew just how complex it really was.

And the support? It didn’t come rushing in. I waited. I chased referrals. I learned to spell cerebellar tonsillar ectopia at parties because, well, what else was I going to do while waiting nine months to see a neurologist?

People think diagnosis is a finish line. In reality, it’s the start of a whole new marathon—one you didn’t train for, didn’t sign up for, and where the medical staff keeps changing the route without telling you.

Hope-Disappointment Whiplash

There’s a particular grief that comes when you realise getting diagnosed doesn’t mean getting better. It’s not like the films—no triumphant music, no quick recovery montage. Just a slow, dawning realisation that yes, you were right all along… and no, they still don’t know what to do about it.

When the initial relief faded, I was left with a strange emptiness. I had the answers, sure. But I also had a list of conditions for which there was no cure and barely any cohesive management. My calendar was still full of appointments, but now they felt heavier, somehow—like proof that this wasn’t going away.

And I felt stupid, honestly. Stupid for hoping it would be different. For thinking that once I had a diagnosis, everything would click into place. That someone would say, “Ah, here’s the thing we do when someone has this.”

Instead, I became the person saying, “No, it’s not rare, it’s just underdiagnosed,” and “Yes, it’s a connective tissue disorder, no, not like arthritis.”

It’s exhausting. Not just physically, but emotionally. You spend so long trying to be taken seriously, only to find yourself once again explaining your condition to the people meant to be helping you.

You Are Absolutely Allowed to Be Disappointed

That disappointment? It's real. It's valid. It doesn't mean you're negative or ungrateful. It means you’re human.

I was angry. Not at the diagnosis itself—I was grateful for that—but at what came next. Or rather, what didn’t. No coordinated care. No “here’s what we’ll do.” Just more waiting, more referrals, more shrugging specialists saying, “Well, it’s complex.”

You can be thankful for answers and still furious that those answers don’t unlock a single damn door.

I cried. I rage-cleaned the kitchen. I ghosted a few people who kept saying, “At least you know now!” like it was a solution and not a sentence. I spiralled into medical research, convincing myself I had to become an expert because clearly no one else was going to manage this for me.

And then… eventually… I exhaled. Not because I’d figured it all out, but because I realised I couldn’t live in that emotional loop forever.

What Realistic Hope Looks Like

So, what now?

You build a different kind of hope. Not the fix-it-all kind. Not the “maybe next year I’ll be better” kind. But the small, resilient kind—the kind you can carry even on the rough days.

For me, that meant:

• Finding a pillow that actually helped my neck

• Celebrating days when I could make it through without codeine

• Letting myself read something fluffy and escapist without guilt

• Discovering that some joy, however small, still lived alongside the mess

And honestly? It meant knowing when to stop. When to put the research down. When to stop refreshing the NHS app. When to take a break from trying to “get better” and just be.

Sometimes I give myself a little metaphorical holiday. I stop checking in with every single symptom. I run a hot bath, binge something daft, eat food that makes me happy, and remind myself: this life still has meaning. Even here. Especially here.

Don’t Let It Take Your Hope

Chronic illness will take a lot from you if you let it—time, energy, sleep, plans, confidence, and about half your social life. Don’t let it take your hope too.

And I don’t mean toxic positivity. I mean something quieter and sturdier. The belief that even if there’s no cure, there is still beauty. Still friendship. Still strength. Still laughter at inappropriate times. Still cake and tea.

You are still here. And you’re still you. No diagnosis can take that.

So take your break. Cry if you need to. Scream into a pillow if you’re feeling poetic. But keep a little spark of hope somewhere close by.

You never know when it’ll catch light again.

If This Hit Home, You’re Not Alone

If you’re standing in the weird, anticlimactic space that comes after diagnosis—wondering what now, where next, and how to keep going—please know this: you are not the only one. And you’re not failing.

Here are some places that helped me when I needed someone else to carry the load, even for a moment:

• The Ehlers-Danlos Society – Global info, research, and community

• Conquer Chiari – Resources and support for Chiari Malformation

• The Mighty – Real stories by real people (aka our people)

• EDS UK – UK-based charity with tools and advice

• Scope – Disability support, benefits advice, and workplace advocacy in the UK

And if all that feels like too much? That’s okay too. Come back to it later. Or not at all. Sometimes the most radical act is just surviving the day—and making it yours.