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…

@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

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

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

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

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.

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 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.

@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’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.

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 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

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 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

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

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!

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!

We don't know what the diagnosis is?

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.

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

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.

🌷

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.

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

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 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.