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…

What is the diagnosis?

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

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.

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..

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.

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.

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.

@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.

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.

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.

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.

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

You'll never again be as ill as you are now - this is the beginning of finding treatments and getting the right care. It feels bad but you'll look back at this as a positive turning point. I had a chronic diagnosis at 24 when I was still seeing the symptoms as a blip, I'd soon be back to "normal," it is hard.

However, getting treatment, getting your symptoms under control, getting your energy back - you do start to compare yourself to the most ill version naturally. Up until then you are always using the healthy version as the comparison, I think this is when you start to feel lucky, in a weird way.

You will also find that people open up to you and there are loads of happy and amazing people coping with things you couldn't imagine.

I’m sorry to hear you are going through this @Alifetimeofdiagnoises your response seems entirely normal. It’s very hard not having a label or explanation for our symptoms and getting a diagnoses can be validating. I had the same struggle as you before being finally diagnosed with POTs. But once you have the diagnosis it takes time to adjust, and depending on the prognosis/treatment options it can be devastating. I found that getting support through networks (via charities) of people who have similar diagnoses was really helpful. It’s natural to grieve the life you thought you’d have x

I went through shock, which stupefied me for a while, so I felt like I was moving through molasses. Then I was anxious for a while and researching everything, worrying about everything, trying to do anything to help myself with minimizing the impact. I then found a form of acceptance and peace. It is quite zen in a weird way. Its like shit happens and you cant control it, so focus on what you can control (my reactions to things, what I eat and how I exercise, focussing on my family and friends) and the rest will just happen as it happens with the world, other people and my medical condition. It doesnt mean that there arent times that I jump back into the hyper awareness and anxious phase, but these moments are becoming fewer and further in between

sending you a hug for your journey

I would check the therapeutic ethos/approach carefully first if you are interested in this. I think therapy can be really helpful in coping with the MH/grief around having a chronic illness. However, some therapy aimed at those with chronic conditions within the NHS is imo dubious. For example, therapists taking an approach that ME/CFS or POTs is completely psychological/psychsomatic when they are generally accepted as having a physical basis. I’ve found acceptance and commitment therapy really useful though.

I became ill due to my dr not giving me treatment should have had for my diagnosed condition. I am absolutely furious with this dr for the long term effect on my life and my loss of independence. I've recently had further investigations as a result of that illness and the result is that I need no further treatment. So I feel lucky about it.

I have a chronic condition. I was definitely sad and sometimes angry and frustrated and fed up early on. I think that's very natural, you are mourning your old life and how you thought your future would be. Recieving the diagnosis also means it's a finality, you have to face it, you can't hope or pretend it's something else or tomorrow you'll miraculously wake up and everything will be back to (the old) normal. You've also been focused on getting a diagnosis, now it's a what to I do. Go easy on yourself while your brain gets its head round everything.

I have accepted my condition now. I also think I'm better at knowing how to manage it and how to adapt things so I can still do what I want, just modified. You will get there too. (Also accepting it doesn't mean you like it and that you wouldn't change it or that it doesn't suck, just that you don't fight it almost, that you accept this is your life and find a new way to go forward doing as many things as you can that makes you happy).

Not quite the same, as I had a life changing injury, but a previous poster is right, it is a grieving process. There's lots I'll probably never do again, but things have improved considerably in the 2 and a bit years since it happened.

I can't speak for you or others of course, but it pushed me to deal with my mental health, because if I was going to be physically put out some days, I couldn't waste my good physical days being mentally side lined from life. I'm still working on myself but I'm undeniably an embarrassingly positive person most of the time.

I've just been diagnosed with IBD and feel very unsettled by it. A chronic condition that can't be cured. Feels very odd.

Mine's one in a million but life still has quality and wonderful things to look forward to. I never dreamt I'd live to see my DC to adulthood. DC 1 is now thirty, married and about to become a parent any day now.

Hi lovely, I've felt everything you have over the past decade after I had a head injury and post concussion syndrome before being injured by an off label antipsychotic prescribed for severe insomnia and anxiety 😪😞
The antipsychotic drugs then gave me a permanent neurological involuntary movement disorder called tardive dyskinesia that is quite rare, and a bit like Tourette's and Parkinson's disease combined.

To say my life changed utterly for the worse is an understatement, but acceptance has gradually come. I've been through the most awful, frightening and hell like times where I've silently screamed "why me?!" when a part of my body starts doing something weird (like my tongue moves on its own, or my brain feels like it is vibrating inside my head 😱😳😫).

Every day, I've had to be stronger than I've ever thought I could be, and my gratitude for life increased hugely after it all happened. It sounds incredibly cheesy and clichéd but I really do appreciate all the little things, from having a symptom free perimenopause symptoms day (yep, I'm going through that now too lol), to enjoying lunch with a friend, to being with my beautiful family and friends. Life throws some terrible tragedies and awful things at some poor souls, but i do honestly think we are given what we can deal with.

I also reach out to Facebook support groups, and find others who have the same condition that can relate and understand. It makes a real difference to my morale knowing there are people who can empathise.

Sending huge hugs, it's so hard but I think you will be ok. I understand 🧡❤️💗

This.
It’s hard to know how serious it’ll be without knowing the diagnosis.

Ooh yes, forgot to say - i self diagnosed my movement disorder and told my GP what i thought it was. She was absolutely awful and gaslighted me, saying most people get tardive dyskinesia after being on the drugs for years, not after just a week like me.

Of course, I was angry she didn't believe me - I then spent the next few months seeing 4 more neurologists who also gaslighted me too. Finally, I saw the fifth one, who instantly said it was TD and the symptoms I had were typical ones. It felt amazing to I'd validated, and he said some poor susceptible souls can get it after just one pill of a neurotoxic drug.

Sorry for the mini rant- as you can see, it makes me a bit cross 😆😂😆

My life has taken a weird turn with previously unsuspected heart problems which are limiting my life. Initially I felt bloody indignant! - I have never smoked and eat healthily - how dare I get heart disease! I am on lots of drugs as the rhythm is out of kilter and have a cardiac artery stent.

But now I concentrate on the things I CAN do and try not to dwell on those that I cannot.

Be angry now and get it out of your system; be sad and let yourself grieve - and then move on to make your life a good life, even if it might not be what you had envisaged.