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

[Alifetimeofdiagnoises]

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…

So sorry to hear your news, take the time to grieve and process. It will be OK 😃

I think with any diagnosis there's a grief process. I was initially relieved and happy at getting a diagnosis, but then there were things like anger as to why it took so long, or people not believing me etc. I imagine this is probably normal

To the pp who said "there is always hope" - that's not always true, and in all honesty it can be soul-destroying to think so.
I'm sorry to be a Moaning Minnie, but I've been seriously chronically unwell for the last 15 years with fundamental metabolic problems and there genuinely is no hope of improvement in either treatment with drugs or natural healing.

I think I've accepted my lot now, and know that it's given me positive experiences I couldn't have had otherwise & allowed me to grow in other less selfish ways. Nonetheless I would give so much to be able to just walk to the local shops or spontaneously go for a day trip somewhere.

OP I wish you well down this new path, please try to accept your diagnosis & become an expert patient, to make the most of the new & unexpected opportunities that will turn up despite the fact that your world may suddenly seem so small. Don't let anyone give you false hope but be realistic as much as you can, be strong when you are able and angry, sad or whatever you want, when you want.
Best wishes 💐

Agree. I think it's bizarrely ignorant and dismissive to assume everyone will /can get better and "have hope". Some illnesses don't work like that **

Totally normal based on my experience, I was dx with a serious, lifelong illness 13 years ago, it took me a longtime to accept it, I have fully accepted it now. Hopefully you can do the same in time.

I refuse to live in fear of the future, I keep positive, some days it’s harder than others and it’s normal to have rough days, but what other choice, do you have? Pity yourself and worry endlessly, stress is such a bad thing for most longterm conditions, no way I am living like that- I making the most of my life.

Agree.

One of the (many!) hard things with my condition is it’s definitely not going to get better, and it’s not fixable.

I resent having to listen politely while people insist there must be something that can be done, and start telling me about their auntie who had something not remotely the same and magically got better.

It’s tiring enough being in pain basically all the time without having to hold other people’s dismay and disbelief that there are in fact things that cannot be fixed and that fucking hurt.

Agreed here too. Mine is degenerative. I'm significantly worse than I was when I was diagnosed and I haven't responded to any treatment. My whole life revolves around taking painkillers and hoping for one good day.

I have some kind of chronic condition that is yet to be diagnosed. Been suffering for nearly three years since pregnancy. I am utterly depressed by how much pain I am in every day and how limited I feel. It’s also so unviable to others and I feel like without diagnosis others will soon get fed up of hearing it. I feel isolated at times having to assess if I can keep up with others and how in the moment I need to explain I’ve reached my limitation. I have an appointment on Thursday where hopefully further investigations will be explored. All I’ve had so far is an x-ray and physio. I have to take painkillers every day and the only one that helps is cocodamol, but my stomach can’t take it!

I'm sorry your feeling so bad but totally understand. 11 years ago I had a breakdown & didn't quite recover fully then a year later got diagnosed with a chronic pain illness that still isn't under control & is very painful. I then got diagnosed with 2 relatable illnesses. I had to give up work so lost all of my "friends" I'm not the same fun nanny to my 9 & 8yo dgc rolling around sliding down the stairs etc like I was to my 16 dgd. About 7 years ago I got really angry about how much my life has changed & how much I had changed due to the conditions & the impact on my body (weight gain due to limited mobility) & I really grieved my old life. I had to have counselling but mainly have had to deal it myself. I still get angry &/or tearful & am lucky enough to have a fantastic husband who is very supportive & I am mainly ok. Sending you much love & dm me if you need to vent ❤️

There’s a lot of grieving to be done for the version of yourself that we won’t get to be after all.

So much can be impacted that defines our sense of self.

Climbing, hiking, body-boarding - all off the menu for ever. Along with low budget holidays in hostels, little walks with friends, and popping into the town for anything. Never mind the gung-ho game for anything version of me!

And dancing. I struggle to even be in places where dancing is being enjoyed. I’m ok watching performances - it’s not like I could ever move like that! - but parties and discos and live music gigs…. Urgh. So left out and resentful.

@InchesThin That is a very wise post. I think I'm still grieving for the version of myself that I will not be. I'm trying to forge new dreams and aims but it is hard not to get resentful at times. I should focus on what I can do rather than what I cannot.

Thank you @bluebellsandspring

”Should” I think is an unhelpful word for this situation when you find yourself in it.

It takes time, care and a lot of support to get to the place where new dreams are forged.

Be kind to yourself when the grieving needs to be done. I don’t think we get to skip that part and go straight to embracing what’s possible.