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…

I think there also needs to be some general reframing of the idea that ’it’s all in your head’ is a negative thing. It may well be that an individual’s mental health or neurological condition is manifesting as physical impairment or pain. Just because the pain is generated from the brain for whatever reason doesn’t make it any less real to the sufferer. This is obviously a very complex and emotive subject as previously anything that was due to mental health was widely perceived as a personal failing or something an individual can choose to resolve if only they tried harder. That is quite clearly untrue but public perceptions take a long time to change and even though mental health conditions are now more widely understood, less stigmatised and have better treatment options being told ‘it’s all in your head’ still has very negative connotations to most people.

It’s complicated as it’s also very dismissive when there are often underlying complex physiological issues that are overlooked. Most people now understand that having something wrong with your mental health can be just as debilitating as physical but there is definitely something about being told your illness is psychological that is harder to accept, especially with physical manifestations of symptoms.

Its paradoxical in a lot of ways and it doesn’t help to frame any causation of illness in a way that makes an individual feel like they should be able to cure themselves or aren’t believed.

I think one issue too is there are so many chronic conditions that straight forward blood tests , blood pressure checks or even MRIs can't pick up without a very very specific test and you often only get that if your symptoms all point towards one diagnosis. That includes things like Lyme disease, coeliac , non coeliac gluten sensitivity, and often some thyroid disorders where even though it can be picked up in bloods you might be 'on the borders' of normality and GP says 'not at the level for medicating' or post viral issues ( long covid being one) - all of these can have a whole range of ongoing debilitating stuff that takes years to get to the bottom of - if ever. Hence you get situations like OPs who has been mentally struggling for 3 years knowing something ''wasn't right' -

The only thing I've noticed on forums with a lot of US participants is because insurers make money each time, they seem to get every test going in pronto time, which is I know reassuring as a patient with real issues, but costs totally through the nose- hence their huge premiums and has them wanting tests at first sign of a sore throat etc

Whilst I get the point you are making, it is also incredibly frustrating to have a physical cause for your symptoms but be told over and over that it is in your head. Not because that is lesser or because you perceive that as negative but because

• it's often a lazy diagnosis when further tests and questions would reveal a physical cause.
• it means you miss out on potentially effective treatment
• it means you miss out on the understanding of the physical cause and how to help yourself
• there is a gendered element with doctors more ready to tell women the cause is psychological

Because it gives you a reason why you’ve been feeling the way you are, that confirms in most cases that it’s not just all in your head (although mine was - brain tumour!) and they may be able to do something about it and manage it. For me, (very very unbelievably so) it was the best news. I now knew why I was feeling the way I was and that there was treatment that would hopefully help. Until it happens to you, you have no idea how you would react. Trust me on that

I really relate to your last paragraph ❤️

The only thing I've noticed on forums with a lot of US participants is because insurers make money each time, they seem to get every test going in pronto time, which is I know reassuring as a patient with real issues, but costs totally through the nose- hence their huge premiums and has them wanting tests at first sign of a sore throat etc
This is very true and when I commented upthread about participants on US forums giving advice that conflicted with UK practice I didn't mean to imply that I thought the treatment they were receiving was necessarily better. I did suspect it was often financially driven. For example, my DS needed regular investigations which because of his age he needed a general anaesthetic for. His first couple were at 3 monthly intervals and then he moved to 6 monthly then annual. There were American parents in the support group I was in whose kids were still on 3-4 monthly years down the line with them happily reporting "no change, all good" each time. I would not have wanted DS subjected to that.
It's just worth knowing that if you have a rare condition and your online support group is international that there will be differences. On one occasion when DS was unwell and I'd taken him to A&E I was met with a barrage of comments like "Why did you take him to the ER. Just call your paediatrician's office and schedule an urgent CT scan." It could be very frustrating, but I still valued the support from others in the same boat when most people in my real life world were still saying "Never heard of it. How do you even spell that?"

I'm currently undiagnosed and am waiting for genetics testing. I currently have no idea what the future holds in terms of whether my symptoms will get worse. A diagnosis means that my consultant will have a much better idea of what my disability will look like in 10-20 years time. Currently it's just wait and see what happens

It makes it easier to ask for adjustments

I don't disagree with you, but it has happened to me. It depends on the diagnosis. I don't deny that it can be an incredible relief, but there is a balance between that and sadness that life can never turn out the way you expected.

@BrainWontWorkAnymore so sorry that was the diagnosis- all best wishes for ongoing treatment etc - but yes I understand how you would feel - I too worried about this and I think the constant worry but no immediate action or treatment is in some ways at least as bad or worse than knowing what you are dealing with

@MrsAvocet yes that's exactly the situation - on the long covid forum the Americans had all been tested for Lyme, had an MRI virtually on demand, multiple blood tests, and electro conductivity tests on muscles and various stuff to rule out MND etc- at that point I had been waiting 6 months for an MRI and over and beyond the initial blood tests if I wanted more bloods specific to certain conditions I was going to need to pay - as it was I paid to see a neurologist - I'm not remotely pro the US system for reasons it bancrupts people and isa huge money making excercise - but blimey from a patient angle if I needed it I can see why they don't get our system either

I am on a forum for a medical condition and one thing that I think is really poor about the US system is the costs involved. People are worried about the costs of medication and I have read some people say that they are skimping on their tablets and cutting them in half or skipping doses to try and afford their treatment. I also wonder about the people who have medical conditions but who are under insured or don't have insurance and so can't get the whole range of tests that other people in the US will receive almost on demand.

@bluebellsandspring oh I totally agree- which is why I mentioned about support forums that have an international base of posters- some is very US centric and relates to how easy it is to constantly test - but all of course at a breathtaking price if you aren't 100% fully covered off as part of employment etc

@XWKD but the post responded to asked why you would be relieved? I answered. Now you are saying that you do understand why you would be relieved. I'm confused! (Doesn't take much TBF )

Please let me rephrase it. The relief when you find out, and the sadness about what you find out, are different things. If the diagnosis is life-changing or terminal, it can swamp everything else.

I too have coronary artery disease and stents, as well as diabetes and arthritis, and was initially so angry because I had a healthy lifestyle but saw people who didn't yet had no problems. I have found the key is to live with the illnesses rather than in spite of them. This means having respect for your condition, take your medication, attend your monitoring appointments and know your limitations, however this also means living your life as normally as possible within your limitations. Get on with your daily life, follow your usual routines, if you have symptoms then manage them however you need to, if I get overtired I get angina so I need to rest. Know your illness, have a plan to manage flare ups, but absolutely live your life along with it.

Sending you a solidarity hug.

Have you found any sensible online groups on living with unfixable pain? I could use a place to hang out where people get it.

Sorry for your illness OP, but wait until you start the long road to menopause.

I've honestly felt awful for 10 years+. I've had digestive problems, headaches daily almost for 6yrs , migraine, dizziness, sleep issues, mood swings, depression, exhaustion, weird periods. Other women have it worse. Trying to get help from the Dr's was like a nightmare! I've never been to the Dr so many times 😕

I feel like you're almost like Royalty.
Princess Kate - free of cancer in her case, but never actually said what cancer it was. Yes, it's none of our business, her health or your health, so why post about your diagnosis OP? You know people are curious even if they won't say it.

Wtf.
Talk about minimising chronic /serious/life threatening illness.

I am sure menopause is tough too but would you say that to someone who had been diagnosed with cancer?

OP doesn't have to reveal her diagnoses to anyone. She isn't asking for people to give specific advice relating to her condition. She is looking at how to come to terms with her life being changed. What it is does not matter.
Your entire post comes across as having spectacularly missed the point and very me, me, me.

Totally agree

I agree this reply wasn't probably quite as tactful as maybe it could have been, but I have to say, chronic illness (my movement disorder and head injury) combined alongside the other symptoms of perimenopause really is the pits. I think the PP was right in saying menopause is tough - i mean, honestly if I could trade my gingivitis, brain fog, horrible foot pain, worse period pains, dry eyes, etc, I would, but these do pale into insignificance when I compare them to my movement disorder symptoms.

Actually, if someone offered me a million quid, or my good health back, I'd trade in all the money forever and be healthy. 😪💔 Chronic illness is the worst thing I've been through, and health is certainly wealth.

How do you know menopause is worse when you don’t even know her condition? Jesus. Some of us have to deal with our serious health conditions and menopause.

Exactly 💯 this. It's doubly hard having both, that's for sure. 😪

It maybe helpful to if you tell us what you have been diagnosed with, especially helpful for those that keep getting robbed off with the it's anxiety card. Also could offer helpful advice to you.

I mentioned an illness, it was a relief to finally have a diagnosis.
Learning how to handle the pain. Not ignored and brushed aside by health professionals.
i hope Poster receives good support.