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…

You have been on a traumatic journey. Accept that. Fighting to be believed is in itself a painful journey. Then getting a diagnosis really should feel like a triumph. But kinda doesn't. And the resentment of being wronged by all those who didn't believe you. Then the sad realisation that in reality, on a day-to-day basis you aren't actually that much better off. They don't even have a miracle cure, nor even any helpful day solutions, a bit like the most awful chronic pain and them 'it's all in your mind' or the final recommendation being them saying take a paracetamol. and you feel like screaming at them : is that all you've got? 50 years of research and the best you can do is you suggest I take a paracetamol? Or some fucking mindfulness (quite a fan of mindfulness, generally, but not now that it's being traipsed out by the nhs as the answer to everything, instead of addressing the root cause).

Take care. Accept that this stage too, is all part of the emotional journey.

I get it. 13 years and counting. Well, actually I wasn’t really 100% well before that so more like 18 years. Mine is a series of prescription drug poisoning. I was making progress until I stupidly had the AZ vaccine. It put me back years and years. I have new neurological symptoms from it. I don’t even have the energy to have it investigated.

Why do you need to know?

I'm so sorry for your situation but there is now a positive in that you have a diagnosis so can now get help and finally be taken seriously. You might also go through a grieving process, part of which is anger.

Most conditions have groups/societies where people with the same condition can talk via online fora/ums about their own experiences and also about what they've found that helps them.

I hope you can find acceptance of your diagnosis and start to discover what you can do, instead of seeing the limits the condition imposes. It all takes time, though, but you will, I hope, start to feel relief that they've finally worked out what's wrong. It's a beginning, not an end

Of course we do - was it an ingrowing toe nail, high blood pressure, brain tumour or what? Don't come on here with half a tale!!!

If you want a tale I recommend Terry Pratchett.

It took me a good three years to come to terms with it and accept that life wasn't quite going to be like I thought. At the same time it was a relief that I had validation that I wasn't making it up. It was confusing, and I did have therapy to work through it.

Now, though, 8 years later and with several years of having the right treatment, my life is better than it was ever going to be before diagnosis. I've had to accept I have limitations though which was hard.

There is always the possibility of relapse though - mine is recurring/cyclical - but I'm so much better equipped to manage it and therefore reduce the possibility of relapse.

After years of undiagnosed, pain, in feet, joints, back, hands. Tests for everything.
half expecting it to be rheumatoid arthritis.
Finally found a specialist, open mind, prepared to listen.
Fybromalgia was diagnosed. Often misunderstood.

Hardly any for lupus strangely. In the USA there are loads. My doctor referred me to one for MS. To be fair, I did live in the middle of Exmoor so any kind of group was helpful. They were very welcoming and accepting and did help me in just understanding how hard navigating a long term chronic condition was. So I second any kind of groups you can get to (once you’re ready) would be helpful.

Basically this thread is about acceptance. Life often doesn’t pan out the way we had planned. Life events including illness will alter your path. Op hope you can move beyond the initial sadness and on to the next chapter of your life. People on this thread have made some good suggestions on how to cope and move forwards.

Because posters are sharing their stories of serious and devastating illness, and OP might have something incredibly minor, or possibly a diagnosis that isn’t actually genuine.

So? The question is about a principle, not a performative illness competition.
And you asked for the OPs diagnosis way before other PPs mentioned their illnesses.
So, again, why do you 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.

You don't need to know 🙄

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.

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.

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’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.

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.

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.

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?

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 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.

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

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.