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

You'll never again be as ill as you are now - this is the beginning of finding treatments and getting the right care.

That isn't true of all chronic disease and certainly not in my experience, although I'm glad it has been true for you.

@Alifetimeofdiagnoises I received my first diagnosis of chronic illness as a child, and have had more since then. Acceptance does come but there's often a process and like when you experience a bereavement you can be doing ok and then a wobble can come along unexpectedly.

A couple of things to remember: 1) there will always be people worse off than you, unluckier than you, ill-er than you. 2) there's no competition in life of who has it worse. Every feeling bad or good that you have is as valid and equal than someone who is better off, or worse off.

Also, there is always hope :)

There are routine treatments & medicines for my first illness now that simply didn't exist when I was diagnosed - and I'm not old, I'm in my 30s! The trick in the meantime is finding ways to live as well as you can.

Be gentle with yourself, learn what you can, don't fret the emotions you deal with as you get your head around it. You'll be OK x

I just didn’t realise how awful life would be and how much it would eventually change for me when I received a diagnosis of autoimmune inflammatory arthritis and a few years later fibromyalgia and a few other illnesses crept in too. I didn’t react or digest the diagnosis as I just would not have foreseen the meaning of life after it. However I do know if I was diagnosed with a serious life shortening illness like Cancer I would be absolutely terrified and in shock so I think it depends on your diagnosis as to your reaction

I can relate to how you are feeling OP, though it was one of my children's diagnosis rather than my own. I knew there was something wrong but all tests were negative and it was becoming very apparent that the GP, HV and hospital paediatrician all thought that I was crazy. Eventually they did refer us to a specialist in a children's hospital and she was fairly dismissive too at first but finally agreed to some more investigations "as reassurance". Then I finally heard the words "I'm really glad we did that test because..."
Like you, I thought I'd feel elated because I had been vindicated and that I'd want to run round shouting "Ha! Told you so,I'm not crazy, it's real" but actually I was floored by the realisation that my DS had a rare, lifelong condition. It's not life limiting and actually he's now an adult who manages it very well,but initially I felt like I had been hit by a sledgehammer. I'd wanted a diagnosis and now I'd got a diagnosis but it wasn't a diagnosis I wanted - I was extremely conflicted.
As a PP has already mentioned,patient support groups can be very helpful. Unfortunately when my DS was diagnosed there was nothing in this country but I joined a couple of online groups. Most of the members were in the US which wasn't great as healthcare is so different there and it wasn't always useful to have members telling me that I should be pushing for certain treatments that weren't even available in this country. But even so, just knowing that I wasn't the only person in the world in the same position and finding people who just said "I get it" was indescribably helpful.If you can find a group for your condition I'd really recommend it. It often helps to know you are not alone. I hope the diagnosis can lead to some treatment and reduction in your symptoms even if not a cure. Take care of yourself.

I’ve got 2 life changing incurable illnesses at the age of 34. There’s days where I think it’s ruined my life but then there’s days where I think I’m lucky that it’s not something terminal etc and I will hopefully get to an ok age. It’s been a shit turn out for me but it’s life.

@Alifetimeofdiagnoises it’s because all your focus has been on getting to this point and you now have to change your focus. If this is a condition that cannot be cured, is progressive, invisible, chronic or poorly understood then it makes it even harder.

There was a thread last week from someone asking whether some illnesses are seen as more ‘deserving’ and unfortunately that is the case. Not because some illnesses are more acceptable than others but because anything that is long term, can’t be cured or isn’t that obvious to others is really hard for outsiders to understand. People can be empathetic to a point but, through no fault of theirs, can quickly tire of hearing about your ongoing problems and poor health. You quickly learn to limit how much you share and with who. It’s also very boring trying to explain/justify your health history and ongoing issues which is why a lot of people don’t talk about them much.

Whatever your diagnosis I would suggest looking for relevant support groups and charities. Mainly to get a full understanding of your condition, treatments, medications, alternative treatments, lifestyle adjustments, long term prognosis etc. I would then find a therapist - talk through everything you are worried about, the sadness of the life you planned that may now have to change, the guilt you feel for being perceived as a ‘burden’ to loved ones, the failure you feel of not being able to achieve what you once could, the frustration at the lack of support/treatment/understanding, the anger of ‘why me?’ All of these are normal emotions but they do need to be dealt with and getting external support is the most productive way of doing this.

Avoid comparing yourself to others with the same condition, everyone is different and has different levels of support, finances and health. Do not tell yourself ‘so and so has it worse so I should just get on with it’s, this may be true and help give you a sense of perspective but it in no way compensates or diminishes your own experience.

You will learn to ask for help when needed, to pace your energy based on your health, to accept this is the way things are, to adjust and create a new life plan. Ultimately you have to learn to be kind to yourself and appreciate your body is doing its best with the hand you’ve been dealt.

I think it is some sort of delayed shock. You know that something is wrong but until you have a diagnosis you can tell yourself that it's x, y, z or none of those. Once whatever you have is medically confirmed, there's no going back, no more being able to tell yourself that it isn't real - because it is.

I was diagnosed with relapsing remitting MS in 2018 and I'm on Tecfidera. Working well and like PP, I'm not really suffering at the moment. One foot in front of the other.

The diagnosis is a horrible frightening shock, OP, it knocks you over. But I think for a lot of us it’s actually the worst part. Once you get your breath back, it sort of becomes part of your life and you just get on with it.

Obviously it depends very much on what the condition is, whether life-threatening or limiting, what the prognosis is, how well it can be controlled, whether you have to take medicines that cause side effects, etc.

It does become the new normal. You’d be amazed how often life can go on quite happily with a condition other people might dread. I had heart disease diagnosed in my early 30s, and it hasn’t ruined my life.

I hope your condition isn’t very serious, OP, and that you have good real-life support xx

I was the exact same I have a chronic condition as well and it’s hard to get your head around this is it, it’s with you for life now.

I changed a lot of my life. Started prioritising rest and my health but I also started doing new things like going back to uni thinking “I’ll give it. Go see how it goes” I still do things I just adjust.

three different autoimmune conditions lucky old me. Oh and possibly a fourth but I am just not going there

i could have written this myself. 4 years and counting and I am still anxiously anticipating a diagnosis. I tell myself the clarity of knowing has to be better than years of mystery but then it all seems so final? (Especially in our early 30’s)
Sending you a hand hold OP. Be kind to yourself

i could of wrote this post been ill for few years sinus trouble dental stuff caught every cold going i was sure doctors just thought that moaning woman again,nov last year both hands came out terrible ,saw as gp for once in person, urgent blood tests next day, saw skin doctor week later he had 3 people come in to look at me, finally found out no im not a moaning woman yes i am ill have a very rare klnd of lupas, i feel angry that it took so long that i wasnt believed how ill i was, i think gps are under so much pressure that they are used to just seeing everyday illness and when something rare comes up its strange, since then i only have to ask for more nose treatment and its added on my repeat list before i had to fill a form in monthly and beg for more,hopefully we will both get better TAKE CARE OF YOURSELF

@Icanttakethisanymore and @Toddlerteaplease
i was diagnosed with MS ten years ago too.
There are times when I’ve been really poorly but I’m on a good treatment which (touch wood) seems to be working. When I originally had symptoms I was told that it was in my head and the GP actually asked me and DH in to the surgery to talk to us about wasting NHS time as DH called an ambulance when I woke up and couldn’t use my left side. When I was eventually diagnosed I actually went for a celebratory glass of wine as I was so relieved that I wasn’t going crazy! In the days and weeks after that though I became sad and angry and went through a grieving process.
look after yourself OP xx

My life has taken a weird turn with previously unsuspected heart problems which are limiting my life. Initially I felt bloody indignant! - I have never smoked and eat healthily - how dare I get heart disease! I am on lots of drugs as the rhythm is out of kilter and have a cardiac artery stent.

But now I concentrate on the things I CAN do and try not to dwell on those that I cannot.

Be angry now and get it out of your system; be sad and let yourself grieve - and then move on to make your life a good life, even if it might not be what you had envisaged.

Ooh yes, forgot to say - i self diagnosed my movement disorder and told my GP what i thought it was. She was absolutely awful and gaslighted me, saying most people get tardive dyskinesia after being on the drugs for years, not after just a week like me.

Of course, I was angry she didn't believe me - I then spent the next few months seeing 4 more neurologists who also gaslighted me too. Finally, I saw the fifth one, who instantly said it was TD and the symptoms I had were typical ones. It felt amazing to I'd validated, and he said some poor susceptible souls can get it after just one pill of a neurotoxic drug.

Sorry for the mini rant- as you can see, it makes me a bit cross 😆😂😆

This.
It’s hard to know how serious it’ll be without knowing the diagnosis.

Hi lovely, I've felt everything you have over the past decade after I had a head injury and post concussion syndrome before being injured by an off label antipsychotic prescribed for severe insomnia and anxiety 😪😞
The antipsychotic drugs then gave me a permanent neurological involuntary movement disorder called tardive dyskinesia that is quite rare, and a bit like Tourette's and Parkinson's disease combined.

To say my life changed utterly for the worse is an understatement, but acceptance has gradually come. I've been through the most awful, frightening and hell like times where I've silently screamed "why me?!" when a part of my body starts doing something weird (like my tongue moves on its own, or my brain feels like it is vibrating inside my head 😱😳😫).

Every day, I've had to be stronger than I've ever thought I could be, and my gratitude for life increased hugely after it all happened. It sounds incredibly cheesy and clichéd but I really do appreciate all the little things, from having a symptom free perimenopause symptoms day (yep, I'm going through that now too lol), to enjoying lunch with a friend, to being with my beautiful family and friends. Life throws some terrible tragedies and awful things at some poor souls, but i do honestly think we are given what we can deal with.

I also reach out to Facebook support groups, and find others who have the same condition that can relate and understand. It makes a real difference to my morale knowing there are people who can empathise.

Sending huge hugs, it's so hard but I think you will be ok. I understand 🧡❤️💗

Mine's one in a million but life still has quality and wonderful things to look forward to. I never dreamt I'd live to see my DC to adulthood. DC 1 is now thirty, married and about to become a parent any day now.

I've just been diagnosed with IBD and feel very unsettled by it. A chronic condition that can't be cured. Feels very odd.

Not quite the same, as I had a life changing injury, but a previous poster is right, it is a grieving process. There's lots I'll probably never do again, but things have improved considerably in the 2 and a bit years since it happened.

I can't speak for you or others of course, but it pushed me to deal with my mental health, because if I was going to be physically put out some days, I couldn't waste my good physical days being mentally side lined from life. I'm still working on myself but I'm undeniably an embarrassingly positive person most of the time.

I have a chronic condition. I was definitely sad and sometimes angry and frustrated and fed up early on. I think that's very natural, you are mourning your old life and how you thought your future would be. Recieving the diagnosis also means it's a finality, you have to face it, you can't hope or pretend it's something else or tomorrow you'll miraculously wake up and everything will be back to (the old) normal. You've also been focused on getting a diagnosis, now it's a what to I do. Go easy on yourself while your brain gets its head round everything.

I have accepted my condition now. I also think I'm better at knowing how to manage it and how to adapt things so I can still do what I want, just modified. You will get there too. (Also accepting it doesn't mean you like it and that you wouldn't change it or that it doesn't suck, just that you don't fight it almost, that you accept this is your life and find a new way to go forward doing as many things as you can that makes you happy).

I became ill due to my dr not giving me treatment should have had for my diagnosed condition. I am absolutely furious with this dr for the long term effect on my life and my loss of independence. I've recently had further investigations as a result of that illness and the result is that I need no further treatment. So I feel lucky about it.

I would check the therapeutic ethos/approach carefully first if you are interested in this. I think therapy can be really helpful in coping with the MH/grief around having a chronic illness. However, some therapy aimed at those with chronic conditions within the NHS is imo dubious. For example, therapists taking an approach that ME/CFS or POTs is completely psychological/psychsomatic when they are generally accepted as having a physical basis. I’ve found acceptance and commitment therapy really useful though.

I went through shock, which stupefied me for a while, so I felt like I was moving through molasses. Then I was anxious for a while and researching everything, worrying about everything, trying to do anything to help myself with minimizing the impact. I then found a form of acceptance and peace. It is quite zen in a weird way. Its like shit happens and you cant control it, so focus on what you can control (my reactions to things, what I eat and how I exercise, focussing on my family and friends) and the rest will just happen as it happens with the world, other people and my medical condition. It doesnt mean that there arent times that I jump back into the hyper awareness and anxious phase, but these moments are becoming fewer and further in between

sending you a hug for your journey

I’m sorry to hear you are going through this @Alifetimeofdiagnoises your response seems entirely normal. It’s very hard not having a label or explanation for our symptoms and getting a diagnoses can be validating. I had the same struggle as you before being finally diagnosed with POTs. But once you have the diagnosis it takes time to adjust, and depending on the prognosis/treatment options it can be devastating. I found that getting support through networks (via charities) of people who have similar diagnoses was really helpful. It’s natural to grieve the life you thought you’d have x

You'll never again be as ill as you are now - this is the beginning of finding treatments and getting the right care. It feels bad but you'll look back at this as a positive turning point. I had a chronic diagnosis at 24 when I was still seeing the symptoms as a blip, I'd soon be back to "normal," it is hard.

However, getting treatment, getting your symptoms under control, getting your energy back - you do start to compare yourself to the most ill version naturally. Up until then you are always using the healthy version as the comparison, I think this is when you start to feel lucky, in a weird way.

You will also find that people open up to you and there are loads of happy and amazing people coping with things you couldn't imagine.