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

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?

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.

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.

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.

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.

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.

If you want a tale I recommend Terry Pratchett.

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!!!

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

Why do you need to know?

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.

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 know how hard it is to get a DX as a woman - especially one with young kids as everything is blamed on exhaustion/anxiety/stress. I'm so sorry you have this to contend with. I also understand having struggled for years myself. Mine is life-limiting and I am resentful, as it might not have been had it been diagnosed earlier.

When you're seeking answers, and a firm Dx, you focus on the positives that will bring, and there generally are some.

Particularly, people stopping telling you its all in your head, or to go for a bloody walk etc.

However once that goal is achieved... now you have to face the reality of the condition, and the reality of whatever treatment there is potentially not being curative... and all that comes with that.

Its hard, I dunno how you get over it... you just do, keep on keeping on, focus on what you can do, not what you can't. Learn how to manage your health yourself as much as possible.

I can relate. I have SLE. Major organ involvement and have needed chemo in the past. I wallowed for about 4 years after diagnosis… really felt sorry for myself as I was so poorly all the time. I lost my marriage and friends due to it. I moved back home, gave my head a wobble (finally after I’d “ grieved” like others have said). Now I only have major flare ups occasionally, live a relatively normal life, hold a job down, look after the home/kids/ parents/ pets etc. I even went on to have another child. I get tired very easily and catch any bug going etc, but I’m doing great… I think the change in mindset helped a lot. My daughter is being tested for DLE at the moment in a strange coincidence and she feels like the OP. Once she can name it things will be ok… I’ve gently said that may not be the case. OP take your time dealing with this mentally. And don’t google!!! Always worst case scenarios you read about!!! Sending hugs and spoons (if Yano, Yano) x

(Google “ spoon theory” if you don’t!) x

I can join in as well.

I started noticing I was getting very clumsy with my hands at age 36. I convinced myself it was nothing, even though it wasn't like me. I think I knew even then that it was arthritis. But it still took me a while to really understand what that meant for me.

It's been hard. I used to be very strong and capable, always exercising and going out doing exciting things. I don't like thinking of myself as a weak person. I don't like asking for help and I don't like needing other people's help. I've always been very private, so I hate hospital appointments and I absolutely loathe having to deal with the worst sides of the NHS.

I don't know how much impact it might have on you financially, but I lost my career because I needed my hands to work properly do it. I still don't think I've properly grieved that yet and I still talk about my career like it was yesterday. It's not fun claiming benefits, which really sucks. I've been made to feel like a scrounger on several occasions.

In some ways though, it has been good. It's forced me to look at what is genuinely important in my life and I have more time to try and enjoy the little things in life. I've gone back to the art I studied when I was younger, which is going really well for me at the moment. The last piece of art I created was very well received and I'm proud of it. I would never have had the time or the freedom to do this otherwise.

Thanks all. The anticlimax comment is spot on. I genuinely thought I’d be like ah, at last… I told you so type feeling. But actually the medical confirmation was awful. I wish now it was all in my head (whilst I’ve been hell bent on proving it wasn’t!)

A wish for a diagnosis usually comes with a hope and expectation that there will be a cure, or at least significant symptom management strategies, that mean life can resume the normal it had before the illness started. If the diagnosis means those expecations can be fulfilled it results in a feeling of exhilaration and relief. But when the diagnosis means facing the fact that the illness can't be cured, or effectively managed, or is life limiting, those hopes are dashed and that leads to sadness, disappointment, even anger. In that case it's normal to feel like you wish you didn't know, because while you didn't know you still had that hope.

This will take time to come to terms with. You have to think about a new future, one you didn't want. It can be hard to take a 'count your blessings' attitude when what you feel is that it's so bloody horrible and unfair.

I hope you find strength to see past the diagnosis to live the best life you possibly can. Some people use it to go on solo treks around the world or to run 52 marathons. You're not weak if that's not you - it's not typical of the vast majority of people. And similarly you're not weak if, even when you think you've adjusted, you have times when it gets you down, when your uppermost thought is that you've been dealt a shit hand.

I'm not trying to bring you down. I'm trying to offer support in a way that takes account of the reality of what you're facing. Take all the time you need.

🌷

Do all that you need to do to grieve. Be angry be sad shout if you need to. Do not "think positive" as people so glibly say until you reach a point of being having positive feelings. Let all this sink in. One day at a time. I also think it is hard to talk to people who do not understand how earth shattering it is jumping in with advice or a sympathy head tilt. Get counselling later from a group who deal with your illness/condition as they will truly listen and grasp the process you are going through. hugs from far away

We don't need to. All but two posters have been able to demonstrate empathy and give advice about acceptance and coping which are universal experiences regardless of the diagnosis.

I second the LTC pathways via Talking Therapies. They are evidence based and not at all about so called psychogenic conditions.

We don't know what the diagnosis is?

Oh yes; the support groups where mostly the members are in the USA… I am in one for an unusual spinal issue (also self diagnosed before NHS would bother to help) and can always spot the UK posters instantly as they are always the ones begging for help saying they are still waiting for an MRI months and months along/have been refused an MRI entirely. Or have been left in long term excruciating pain with no appropriate drugs.

Whereas the US posters seem to be whipped into surgery virtually instantly or at least offered substantial help/ physio or home gadgets like neck collars for comfort. But yes I agree; it’s nice to know you aren’t the only one!

I’ve had MS for 16 years, I’m late 30s now and I have 2 young kids. I let it completely destroy my 20s and early 30s. Having the kids keeps me busy and active, and I expect yours will too. You only hear about the worst cases, and lots of people around me react with complete and utter horror, but there so many of us actually doing ok, mostly women. I gave up because of assumptions and the anxieties I already had. Don’t let a diagnosis or the words of the ill informed steal time from you. Also medicine keeps improving!

I was going to go on medication for my severe anxiety and depression but your comment has made me change my mind

I was same after my second child, then told I had ovarian cancer but turned out to be endometriosis. Not a fun time! You need time to come to terms with it. I found talking with others with same really helped. There’s a Facebook group for everything x