Anyone else who got a diagnosis and then felt worse?

[notdoingokay]

Anyone else who received a diagnosis and then felt worse afterwards? Both in terms of it being a lifelong illness or disability(i.e. a fully "normal"/healthy life is not possible) and in terms of the diagnosis now being seen as my central identity by others.

Please don't tell me to see the positives of being diagnosed or that I must attribute any strengths I have to the diagnosis, as that's the standard reply to get both online and offline and it feels really invalidating . Looking more for some hand-holding and handling grief from others who've been there.

I guess it depends what the diagnosis is, really. But also your feelings about it might change over time. What you are feeling now is still valid.
My experience is that a diagnosis of neurodivergence was a process of assimilation that took several years to integrate.

A mental health diagnosis… it’s not something treatable, by the sound of your post? If it is limiting, it’s ok to grieve the life you wanted, imo.

For me, there was a lot of internalised ableism to deal with and at first I did feel frustrated and a bit grief stricken, with those ‘I’ll never be normal’ feelings. I didn’t want to accept it as my identity. For me, that has changed. But it’s ok if it doesn’t, nobody can tell you how to feel. It is worth considering though that feelings might change.

I feel positive about my diagnosis now and wouldn’t change who I am, if I could. I might feel differently if it was a different mental health issue, I don’t know. But your feelings around it are really valid. Are there any support groups for people with your diagnosis where you can connect with others?

As others have said it all depends on the diagnosis. Some people welcome having a name for what they've been experiencing, for others it's a label they can never lose.

in terms of the diagnosis now being seen as my central identity by others

That all depends on whether your illness/disability is physically obvious. If it's not then it's up to you who you divulge it to.

My psychiatrist doesn't really believe in diagnoses; or at least, I have them but is very clear that they don't define me and that just because I meet the diagnostic criteria or don't, it shouldn't really impact treatment. I think that's a healthy way to look at it - I'm the same person as before a diagnosis which just how many boxes I ticked for a particular mental health condition.

I did disagree and got upset with a diagnosis from a previous psychiatrist but my current psychiatrist agreed with me that it was total bollocks.

In terms of how other people see me, I don't generally disclose my diagnoses other than PTSD from time to time as it sometimes explains why I act in certain ways eg I told my dentist about it because it means that I struggle with particular positions during dental treatment.

I'm so sorry you're struggling with it though and I hope you find peace in time.

I was initially very upset about my diagnosis because I didn’t have any insight into how unwell I was. I spent most of my appointments arguing about it before eventually deciding to act as if it was true and follow the evidence-based recommendations for treatment and self management. I still feel slightly wronged by the whole thing. It doesn’t feel like a good fit and there are other conditions I identify with far more but I could never get the original diagnosis changed.

Is it similar for you OP?

I have seen psychiatrist in four different countries. My diagnosis has changed so many times that I don't really trust them. Lately it has been medicating my symptoms mainly.

Yes, I felt much worse after my diagnosis and being offered thrice weekly psychotherapy on the NHS. I guess I still hoped someone could convince me "You're OK, everyone feels like you do". The fact that I was accepted as mentally ill and an urgent case was actually quite frightening. Ridiculous isn't it? I asked for help, they said yes you need it, I freaked out.

Yes, there are support groups, but as many people wanted their diagnosis (or at least wanted to be assessed) it feels like the last place to discuss my feelings…

I have felt this way for a really long time, I’m not recently diagnosed, but it’s like a delayed grief over parts of life I’m not likely to experience.

And it feels like the conversation is dominated by people who really like being different and want to stand out. (To be fair, it could also be because they’re in the majority…) While I’m quieter, not as shy as I was as a child, but I would prefer not to be very “visible”.

As for insight? I don’t feel 100 % healthy or normal, but I do feel like professionals I've seen are putting a lot of weight on my less functional sides and also putting words in my mouth, if that makes sense.

Thanks for all for you answers!

OP, it's yours to relate to and do what you want with. Someone else has diagnosed you based on a set of criteria however as relevant as it may be at that point in time we are constantly changing and evolving so you don't need to be defined by it. I have been diagnosed with depression and anxiety in the past, in fact I volunteered that this was what I had, however I suppose I haven't chosen to hold these as ongoing truths, although they were relevant at the time and i worked with them. It is absolutely fine not to agree with someone just because they are a professional, in fact to question and enquire seems to me to be a healthy and fluid stance.

A diagnosis can be the end of "hope" in a way. That part of you that thinks that you can get 'over it' has to accept that actually, no you can't.

Positivity in a diagnosis has its place, but the side effect is that those who struggle to see the positive are silenced in the very groups that are there to support them. Hardly seems fair.