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Original poster

Finally a diagnoses, so why do I feel so sad?

162 replies

Alifetimeofdiagnoises · 14/01/2025 20:17

Three years ago, shortly after the birth of my child I started to get physical symptoms. Horrible, debilitating symptoms that have floored me some weeks. I have probably seen the gp in excess of 15 times, had multiple tests at the hospital and was still left with no diagnoses. (My gp was absolutely convinced it was all in my head and I just had anxiety.)

I have been desperate to prove my illness tbh. Well today, 3 years and 5 months since the initial symptoms I finally have a diagnoses after further medical testing. I thought I would feel relieved, grateful even… but now I just feel so bloody sad. I’m 33 years old and I have a life changing illness that I could have never predicted. I was completely healthy before this shit! I just feel so bloody unlucky. I want to be normal and reverse the clock! I want to work, and exercise and live.

Posting in the hopes someone else who has been here can tell me the acceptance sets in and you learn to live with your new normal? Just need a slither of hope…

OP posts:
Icanttakethisanymore · 14/01/2025 20:53

Toddlerteaplease · 14/01/2025 20:48

@Icanttakethisanymore same here. I was diagnosed 13 years ago yesterday. Completely out of the blue. As I'd had a scan as part of a research project, and it came up on that. Have been quite unwell at times. But have done really well on Alemtuzemab.

That’s what I had too (first round in 2018). I’m glad you’re doing well on it too x

Nchanged89 · 14/01/2025 20:52

I was diagnosed with MS approx 16 years ago, the grieving process is accurate, my life took a different turn but it's all good at the moment.

TrixieFatell · 14/01/2025 20:52

I think we also have quite set ideas what someone who has a condition is like and it can be hard to view ourselves as the same after too. There's also the hope that maybe it isn't what you think it might be but then that hope gets taken away.

Toddlerteaplease · 14/01/2025 20:49

It's such an odd feeling when you get a diagnosis. It's hard to remember that you are the same person you were yesterday.

Toddlerteaplease · 14/01/2025 20:48

@Icanttakethisanymore same here. I was diagnosed 13 years ago yesterday. Completely out of the blue. As I'd had a scan as part of a research project, and it came up on that. Have been quite unwell at times. But have done really well on Alemtuzemab.

Icanttakethisanymore · 14/01/2025 20:45

I was diagnosed with MS a number of years ago. My DP said to me “life might end up being a bit different to how we imagined, but that doesn’t mean it can’t still be a good life.” As it happens for me the treatment I had has meant I’ve had no symptoms or disease progression in 6 years (since diagnosis) but I know that might change in the future. It’s a grieving process OP, it takes time.

Original poster
Alifetimeofdiagnoises · 14/01/2025 20:43

Thanks all. The anticlimax comment is spot on. I genuinely thought I’d be like ah, at last… I told you so type feeling. But actually the medical confirmation was awful. I wish now it was all in my head (whilst I’ve been hell bent on proving it wasn’t!)

I hope I don’t offend but it’s made me feel like a bit of a statistic. Or worse a fraudster. I do think it’s just because it’s taken so long to figure out what it is.

OP posts:
Botanikal · 14/01/2025 20:41

It’s taken me 3 years to start to come to terms with mine. I think it’s normal to go through a lot of emotions in the process.

existentialpain · 14/01/2025 20:39

You do adjust eventually ime and realise that life goes on, but in a different way and at a slower pace. You may find you appreciate life more by moment than having lofty goals. A life changing diagnosis often changes your entire mindset.

It's really not surprising that you're grieving. Until recently you have been focused on trying to find out what is wrong. Now that you know it can feel like a horrible anticlimax. It takes time to process this news and feel your feelings. It does get easier..

TrixieFatell · 14/01/2025 20:34

I had a diagnosis after the birth of my third child. It wasn't a physical illness but a mental illness but quite severe. It took me a long time to come to terms with it, there's stigma that goes along with it and I didn't want the label. But there was also some relief in that what an I had been experiencing was for a reason and it wasn't just in my head (scuse the pun). I have had to go on medication that I will be on for the rest of my life and I have had to make changes at work. I have accepted it, and have accepted that I have had to make lifestyle changes. I do still get upset I have this illness and the repercussions of it. I know it's not the same as a physical illness and I am sorry you have experienced what you have. I just wanted to say I think it's normal to have this reaction to a big diagnosis and that there is a new normality after it.

Catza · 14/01/2025 20:28

IAPT are running therapeutic groups for people with chronic health conditions which helps with acceptance. I would have a look at self-referring to your local one ASAP

bimbodoc · 14/01/2025 20:26

What is the diagnosis?

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