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…

Not helpful!

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

@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.

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

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

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.

I have read all the comments and really appreciate other people telling their own stories, it does help to hear. It is so sad so many people have been told it’s just anxiety for years, that I would say has been more frustrating than the symptoms some days. Even from family and friends, I understand when test after test come back clear people assume that, I just wish they could have jumped in my body for a day! Anyway… 1 day at a time!

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?

@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.

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.

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.

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!

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.

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

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

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.

💐

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.

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.

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.

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 😞

💯 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 💐

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?

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

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.

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