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

Depending on the condition though,.that's not always the case.

When I was in a similar situation, it helped me to think well I'm actually no worse today than I was yesterday and tomorrow, I won't suddenly get worse.

Sorry to hear that, OP - I had a brain bleed during the birth of my last child which damaged my pituitary gland. It took a year of me being very ill and nearly dying on several occasions (basically each time I got a bad cold) for them to pick it up and stop telling me I was just a tired mum!

I'm on several types of tablets and daily injections for life, and when i go abroad it's a massive rigmarole as I have to carry a cooler unit for medication - and I travel a lot with work. You go through a stage of thinking 'why me - this is so unfair' but it passes and you get used to it. If you could tell us the diagnosis someone might be able to help with the practical side, if they've had the same.

Definitely this too. All my family were initially quite unsupportive as my condition is rare and rather bizarre as far as neurological movement disorders go. The closest most people can relate to it is Tourette's or something like Michael J Fox with Parkinson's and his dyskinesia he gets as side effects from his meds.

I think my family do understand my condition somewhat better these days, but I've felt like an exhibit by medical professionals who most likely won't ever see someone with my disorder. My obstetrics doctor said he'd only ever read about it in textbooks, while a student doctor wanted to write a case study on me after my ectopic pregnancy operation, as he had never seen anyone with it either 😳😆😱

I think I understand OP. I understand the anticlimax element. I was very ill for a long time after having DS, lots of vague odd ‘in your head’ symptoms. Is your diagnosis autoimmune? Seems to often be fobbed off as in your head as they can all present so oddly. Anyway when I finally got a diagnosis 5 years later (lupus), I was a bit like ‘huh’!. But also found it very very validating - it’s not in my head, I’m not making it up! And now we know what to do about it!
Good luck op!

Although I know this was meant to be a positive comment not all chronic illnesses are linear. Many are degenerative. Which can be very hard to accept this

Yes all of this.

There's a real gap in care.
Some conditions have their own specific charities that will help but the support varies wildly

And if you have a condition family and friends haven't heard of/ don't understand their reactions can be painfully underwhelming too

I agree that the OP's diagnosis is completely irrelevant. If she'd wanted to share it she would have done. Posters who have chosen to share their diagnoses in response have presumably done so because they wanted to - they were under no obligation to do so, I didn't include my son's diagnosis in my reply. It doesn't matter what is wrong with the OP in this context, it is entirely about the conflicted feelings that come at the end of a long diagnostic journey and those of us who have been through that can relate even if we all have very different conditions.
But it is silly to suggest that it's likely to be something common or trivial anyway. For all the deficiencies in NHS care it doesn't take years to diagnose high blood pressure and you don't get told fungal nail infections are in your head!

@ShadowCalls I do get that - it's just difficult to gauge how to come to terms on reactions/ emotions to a diagnosis when no idea of how life changing it might be.

I think my own thing would be to follow professional advice rather than spend hours googling , find any support groups out there - some Facebook ones are very good- I know myself when I had terrible neurological stuff post covid that I found the long Covid forum very helpful and quite reassuring

I can understand why someone might feel relieved when a life-changing diagnosis had been made. I had a diagnosis last year which provided an explanation for medical symptoms I had. The diagnosis didn't change the symptoms, but in a way it was a relief to know why I had them. It is however something that has taken time to accept as there are aspects of my life that have been changed. I had always hoped to do a lot of travelling in early retirement and now realise that this is likely to be impossible due to insurance costs. I have to rethink my plans and aim to visit every corner of the UK instead. Although diagnosis can bring relief in that you can have more certainty about what is going on, it can also cause a grief process as you realise aspects of your life or dreams for the future are now impossible.

This is where the NHS really falls down - great at giving these life changing and at times life limiting diagnosis but give absolutely no back up or counselling to deal with it.

I remember I was given my diagnosis very quickly over the phone by my Consultant, I could tell that he really didn’t want to have to talk about it! when I got off the call, me and my DD’s googled it, having not heard of this particular variant, when we did, we sat there in a total state of shock. Then comes the depression and trying to come to terms with what it means and the implications on your life going forward. So I do understand OP and everybody else on this thread that are going through the same.

Because when you have been living with the symptoms for years and everyone is implying they are all in your head you really want answers and confirmation your suffering is as real as it feels

Why would you be relieved that a life-changing illness is diagnosed?

The op isn’t asking for advice, she’s trying to make sense of how she feels about her diagnosis.
So there’s no need for her to state what the diagnosis is.
When I diagnosed with a life changing condition the last thing I wanted was advice.
I know some people genuinely want to be supportive but in this situation advice isn’t the way to do it.

This thread is so timely for me, i received a diagnosis in Friday. The nurse practitioner was pretty flippant, oh yes, you have X, you'll need to be on medication for the rest of your life, bye. I still don't know how I feel about it. I have no idea how to begin to process it. I'm finding reading through others experiences comforting and hope I'll be able to reach acceptance too

I went 20 years struggling before getting a diagnosis.

I fully understand the mix of emotions. To begin with I was pleased to finally have answers but then other emotions kicked in; anger, frustration , grief, worried about the future

Are you in any support groups(online or otherwise).for people with your condition?

💯 don’t write off medications without medical advice.
Neurochemistry is a delicate thing to play around with, although i appreciate the frustration of having to take anti anxiety or anti depressant meds.
You CAN have a life changing illness AND also need psych meds. Those meds don’t negate the validity of your illness or mean you aren’t strong enough to cope with it. They are not for everyone, but for some people they are literally life saving 💐

Absolutely 💯 i agree. I was polydrugged by various other meds before the antipsychotic was given as a last resort, so it was jusy very unfortunate that it was such a potent neurotoxic drug. I took Citalopram at another occasion and it was ok.

It's definitely worth trying meds for anxiety, they are mostly safe. I was just unlucky 😞

Oh and for those “tell me the diagnosis” posters…read the room.

It’s not about the condition, it’s about the process and it’s none of your business anyway.

Don’t detract from a supportive and kind thread with aggressively intrusive questions.

OP obviously is still processing the diagnosis: do you have any idea how painful it is to write “I have x” when you’re at that stage in the journey?
Give her some space and if you can’t be kind, be quiet.

Antipsychotics have given me my life back, they have stabilised my mood and the severe depression is so so rare now it's amazing. Honestly I don't regret going on them, I just wish I'd had them sooner. Talk about your concerns with your psychiatrist, they will be able to advise and find an appropriate medication.

This is true 👍 I'm not the rule, definitely. My psychiatrist did say i was "bloody unlucky" to be harmed by the antipsychotic after just a week, so it is more than likely I'm just more susceptible to adverse effects because of my genetics etc.

My experience won't definitely be someone else's. And everyone reacts differently to drugs too.

I’m sorry you’re going through this OP but thank you for starting this thread and for the lovely PPs who have commented.

I’ve had life changing chronic illnesses for over a decade and have found that I tend to peak and trough with regards to my acceptance of it: if I have a good day, I overdo it and then pay for it. Or I’ll catch a virus (like this week!) and be so frustrated that I’m bedridden when others could take some Sudafed and go to work.

it’s an ongoing process but do take time to grieve and I whole heartedly recommend talking therapy.

💐

I have 2 friends with MS, both in 40s diagnosed in 20s plus another one in early 60s -the 2 in their 40s are fitter than me but both take meds , work at it fitness wise and do get rare flare ups- the lady in her early 60s is different, it has been life affecting , however she is totally fabulous and still does an awful lot and has a great life quality - although has periods where it's easier than others -

It's hard to know what to say OP as it could be anything from MS to Lupus to fibromyalgia to coeliac - as one persons huge issue is another's- ok, what's the management schedule, let's get with the treatment.

I do think it would be helpful for you to say - others will have been in this position and can offer advice- I am really conscious of sounding glib in case it's something like Alzheimer's or MND or leukaemia or something - but without knowing , we are all kind of wanting to help you from behind a dark curtain

Oh please don’t not take medication for your anxiety and depression because of one case of someone having (admittedly very bad) side effects. She says it was an off label use of an antipsychotic .
off label means not what the medication is initially intended for.

If you are looking at starting medication for anxiety and depression, my guess is you will start with something like an SSRI- these are very much intended to treat anxiety and depression. Many, many people take them and find they improve their quality of life (myself included!).

Please at least talk to your GP about your concerns- a good GP will be able to talk you through this.

all the best - anxiety and depression are horrible and can be debilitating . Xx

When my daughter after 14 years got her diagnosis of autism I felt very much the same.
It was both awful to know I hadn't been imagining it and anticlimactic because this was the end i had been so focused on fighting for and yet in reality that day was no different then the day before when we had no diagnosis.
I think in the end that the key thing to take is that nothings changed for you physically because of the diagnosis it just means now hopefully treatments and help will be easier to access.
Give yourself some time to process and look up some society's in relation to your condition there's one for everything so your bound to find one.