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

Totally get you. I'm in the same boat, decline for over half my life and only in last few years was I given a diagnosis... Thought I'd be happy "Ha! I told you so" but instead felt and still feel disappointed, angry and deflated. Getting a diagnosis hasn't fixed anything (obviously) and people still can't understand my illnesses.

It's lonely and frustrating and I almost wish I had no diagnosis as I could sort of live in hope that when I do, I will be magically fixed, if that makes sense?

Anyway, sorry you're dealing with this!

I would focus on the "positives" a diagnosis gives you.

Hopefully now you are under a consultant who specialises in your condition and you are able to receive treatment / support (financial as well as medical)

A diagnosis is awful (we received a life changing diagnosis for DC3 when they were 11 days old)

Eventually I was able to focus on knowledge being power. I joined support groups, I made sure DC3 was under the correct hospital / team. I sorted out physio and SLT (private, alongside the NHS offerings), I applied for DLA etc. I used the diagnosis to make sure DC3 had all she needed.

We're many years down the line and I won't pretend the early days weren't hard. You mourn the life you will no longer have but ultimately receiving your diagnosis should have a positive impact.

are you more upset about having a diagnosis or about it being something serious?

regardless of the diagnosis you have been unwell for a while, so the diagnosis doesn’t negatively change anything. You still had the condition previously, you can’t change having it either, but now you know what it is you can try to manage and mitigate it. So the diagnosis itself, although shocking, should hopefully open some doors for you in terms of treatment and moving forward.

I had a shocking (to me) but not serious skin condition diagnosis during the pandemic. I was in floors of tears in the appointment, but it hasn’t actually impacted my life as much as I thought when I was told I had it and it is incurable. I think when medical professionals break the news, you’re given lots of information to soak in and it’s overwhelming. I thought my life would never be the same. It hasn’t actually changed that much like I just use specialist products when I have a flare up.

I’m now glad to finally have the diagnosis, looking back there’s loads of little things I noticed that I felt were too minor to go to my GP but now I know they can all be attributed to my skin condition. Like the jigsaw pieces are finally in place and the maths are adding up sort of thing.

@Alifetimeofdiagnoises I wouldn’t take one persons bad experience as a definitive indicator of what to do regarding your own health. Medications for anxiety and depression are vast and varying depending on strength and type of condition they are treating. I am medicated for these conditions and have had nothing but a positive experience. Medical decisions should be made with full knowledge of your condition, the medication, common side effects and guidance from your doctor. Don’t dismiss medication because of someone else’s situation.

I hope I don’t offend but it’s made me feel like a bit of a statistic. Or worse a fraudster

Eh? What's the diagnosis? How does it make you feel like a fraudster?

My child was diagnosed with autism. I guess the diagnosis left me with no shred of doubt that it wasnt just a collection of symptoms that looked like autism. 🤡

I have to look on the bright side. I could have just ignored everything because quite honestly she's not a difficult child generally. But with a diagnosis, it makes getting access to things much simpler in theory. I can give her allowances. It's much simpler to stay calm and know that not being able to do things is not actually because I'm lazy or whatever, it takes a whole lot more effort to get there.

After the third time of reading the diagnosis letter, I started seeing positives that they had seen.

I've done therapy in the past, sometimes when something is mentally painful, it's ok. Allow yourself to feel those feelings. It will hurt less over time.

@Soontobe60 read the room. You’re not coming across well.

Who me! What about the poster I was responding to?

@MmmmmmmToblerone a friend of mine went through something similar. She’s had a full hysterectomy and still has lesions to her organs. Diagnosis for women’s issues is appalling. I’m so sorry you had to go through all that.

That’s appalling, MmmmmmmToblerone.
I’ve often heard the same from other women whose endometriosis took years or decades to be diagnosed.

This makes me think women should ask for referrals to other hospitals if the one they’re with keeps finding no answer.

Have you pointed out the wrong information and asked for it to be corrected to endometriosis? I hope you soon start getting effective treatment xx

Not helpful!

It’s hard, OP. I had a life threatening sepsis a couple of years ago. It’s permanently reduced my capacity for activity. Not CFS but just lower energy. I have two young children and it’s hard. I’m only just beginning to realise it’s not going away any time soon and it’s hard to come to terms with. Like you, I was wildly healthy and active before the sepsis, so it’s been a huge change. Hugs and be gentle with yourself, mentally and physically.

Same here, all kicked off when fractured my ankle in 2018 coming downstairs leg just gave way. Work (the nhs )was difficult & putting me under pressure felt ill & I didn’t know why. Little bits of illness rearing its ugly head even my family accused me of making it up. Eventually A&E visit with chest pain picked from there kidney disease & I now have 5 autoimmune conditions, the treatments of which have caused fractured pelvis then ribs & low cortisol. becoming allergic to everything. I was lucky I was able to retire. People do judge you on how you look & give dietary advise, had one the other day apple cider vinegar will cure it. FB support groups are really helpful. Mobility has been affected some days more than others, learning to pace yourselves give yourself time to get your head round it. Your life becomes smaller very quickly , I have regained some of me back , but takes time for you & others to realise that the old you has changed. Best of luck

I work for a specialist ME/CFS service and, no, we don't take that approach. In any case, IAPT group is focused on acceptance and grief. They don't make judgements about the nature of your condition and they have quite a range of attendees with a variety of ailments.

No, it's her life, not entertainment for us. As it took 3 years to diagnose and she's feels like this we can surmise it's not an ingrowing toenail... A lot of the feelings and experiences cuts across conditions anyway.

I don’t mind sharing my story with the OP (I have MS) in the absence of them sharing their diagnosis. I think if you’ve been through it you understand that saying (or even typing) it can be hard in the early days. Obviously there’s a chance the OP has a fungal nail infection but I would imagine it’s much more likely they don’t. Also, anyone can lie on here anyway, I prefer to take OP at face value; it’s no skin off my nose.

edit to add that I can se why for some people it might feel difficult to offer support without a diagnosis but I wonder (I could be wrong of course) if perhaps those people haven’t been through a life changing diagnosis?

Love this thread. Don’t love that we’re experiencing this, but love the solidarity and understanding.

I’m a few weeks on from diagnosis arriving for bad pain, and OP, I recognise so much of what you describe. Thank you for posting. I feel less alone with it right now.

I’d love to find a group to help re-frame this somehow into a manageable prospect.

lifelong pain - will deteriorate - likely to lead to wheelchair

My biggest fear right now is pain management. It’s been hard to get suitable pain meds prescribed and I don’t know if I can face a lifetime if living with this level of pain and more to come.

Your first sentence is so right. My dad was in a great deal of pain in his back and hip three years ago. He could barely move. He was diagnosed with cancer - multiple myeloma. Once he started his treatment the pain gradually went and although he had the scary diagnosis of cancer his quality of life started improving again.
He is currently in remission but it can return any time as it is a managed cancer not a curable one. He can live with that so long as he never has the pain he had at the beginning. He is under regular monitoring so hopefully he will be ok in that regards.

I’ve been on MN for 20 years and I’ll post where I like thank you. But the diagnosis is very relevant. Because if the OP has a fungal nail infection it’s not fair for people to share their stories of debilitating MS and IBD. Plus this is AIBU. Well known for straight talking.

Well actually I didn’t ask before others posted. I think you’re confusing me with someone else. But the diagnosis is very relevant. Because if the OP has a fungal nail infection it’s not fair for people to share their stories of debilitating MS and IBD.

I can relate to this - when I was diagnosed with MS I actually became more fearful of death (I think because it was SUCH a shock that I felt like it could have just as easily been a brain tumour or terminal cancer). Then I became very grateful I wasn’t dying… it’s so strange the journeys our brains take us on.

All irrelevant, she has a diagnosis for an illness. This post is how she feels about that information, not what the diagnosis is. She doesn't need a busy body determining if it exists, or if it is something she should feel differently about it because someone on the internet determines it is minor.

This is not the thread for you.

You don't need to know 🙄

I understand your frustrations and upset over this.

After 25 years of struggling with gynae and gastro issues I was finally diagnosed with Endometriosis in 2023, at the age of 50. This was despite constant consultations, tests and uncomfortable procedures over these years and all at the same hospital with the same consultants. I still need an operation and have been stuck on a 18 month waiting list since last year.

If it wasn't for me requesting a mri I would still be none the wiser and yet it still states 'Health Anxiety' on my gastroenterology letters. Is it any bloody wonder.

I am so so angry for being gaslit for half of my life and I don't think I will ever get over that.