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Young and coming to terms!

Hey I have SLE for over 3years It became active at 19 and I was diagnosed at 21 and I am still struggling health wise sore joints tiredness ect. Even though my bloods come back fine. I am having more trouble mentally, forgetting what I am saying mid sentence, confusing, and now I keep getting angry at people just in simple situations! Like when I am in a shop and I am yawning uncontrolablly.. And they make jokes like oh are we keeping you up? Or when my boyfriend is doing all my shopping packing and I am just standing there and the check put person gives me i look, I feel like I need to wear a badge that says I'm dying leave me alone! The problem is I am young and have bleach blonde hair and people would never think for a second that I am I'll, even when I have to use my walking stick people stare at me... I know this is me and not them.. But does anyone have a way to speed up this coming to terms with things? I am a lovely person and I hate being this angry person. :-/

7 Replies

In my head I am still the active person I always used to be. It keeps me upbeat to continue to believe in this. But I know I cannot do much that I used to do. And even on a good day I know there may be a kickback if I push myself too far.

I often find myself putting off doing the simplest of things, but tell myself its just a bad day. I know it may not be but thats my way of dealing with it.

I can do these 'fooling things' easily as I am not in a relationship. When I was my partner constantly pointing out my failings used to irritate me intensely.

Now I structure my time to suit my abilities at the time,


Two things helped me come to terms: (i) reading as much as possible about this illness, including research papers, medical journals, scientific websites, lupus foundation of America website, alliance for lupus website, lupus institute for research website, all these websites publish articles on clinical trials and efforts made by the medical and scientific industry to understand this disease and to find ways to improve our lives; and (II) reading posts in this forum.

The former because it puts it into a wider context of what influences who we are and how we got to have this illness and basically shows that there is very little we could have done to prevent it unless we knew about our predisposition to it. That helps in absolving ourselves of the guilt and anxiety coming from "could I have done something to trigger it". And also because I realise that although our doctors don't really give us much support, there is a whole world out there that is focusing on lupus and tries to get to the bottom of it, so I don't feel as helpless or hopeless.

The latter because I puts it into the context of the magnitude of this illness across the board - you will realise that your symptoms are only a small part of what could really happen to you if all goes wrong, you will learn that there are many others suffering of things much worse than you and coping for years nevertheless. This forum will also teach you a coping mechanism, will give tips on how to live and laugh and cry and not give up with lupus.

So don't beat yourself up about being angry, it is normal. And don't expect to come to acceptance quickly. We all have our own way of coping with such news and the road to acceptance is not easy. But you will get there in the end because our bodies are designed to fight for survival and, boy, they will fight!

Welcome to the forum and I loved the mental image of the check out person looking at you and the image of your blond hair. Nobody puts Baby in the corner, though, remember? Be strong xx


No need to add as Purple top said it all so well, we are all different, it took me 2 years to move on from the denial stage by following all the kind of advice and help that Purple top brilliantly described : )


I'm really sorry you feel like this, we all totally understand. My lupus started when I was 25, my son was 6 weeks old and my daughter was 3. I almost died and ended up in intensive care for a long time and missed my children so much. And despite all of that it still took a long while to get a diagnosis. It's never properly gone into remission and I have constant pleuritic pain. I spent a long time being angry and bitter about the illness and how it affects my life with my children, and the fact that I can't have any more. I've also gone through phases of wondering if it's all in my head, even though I'm in agony, because I look so well still. I guess it's denial. But you'll get there. And that's not to say you won't have days where you're angry and upset and downright miserable. But you'll learn to live with it and it will become normal and you'll start to appreciate what you've got despite the lupus. I've had it for just over 3 years and only just come to terms with it but I guess having children helps, even though it can sometimes seem impossible to look after yourself, let alone anyone else. Take care and post on here whenever you need to, it really helps xx


To be blunt I'm afraid it is you, and I only know that because I was the same lol. Acceptance does come slowly but it does come because you will change and realise that after the 100th time or so it has happened to you that all of a sudden you just don't care anymore. So if you want to speed up the acceptance stop caring what other people think :-)

You will also develop overtime funny things you can say to people when they give you comments ie are we keeping you up - no your just boring lol. If they no you have a comeback then generally stop doing it.

We can't stop the things that happen to us but if you bring humour into your life it will stop the levels of anger building up.

Stay strong xx


I cant offer much advice on when to accept this illness other than everyone is different, some are relieved to have a diagnosis after years of illness and others find it hard to come to terms with. I was bit of both relieved as i knew something was dreadfully wrong and mourning for the care free happy person i used to be. I have accepted my condition now and yes somedays i get so angry and frustrated with why me's? I would love to go jogging, wear heels, go on a sun holiday but i cant because of pain, photosensitvity and tiredness. Most days im a happy person, but dont feel bad if you are angry at the world some days you are young and dealing with an illness, but stay strong, positive and maybe tomorrow will be a brighter day, remember your not alone, we all suffer like this, lupus makes us stronger and fight harder, chin up lady x.


I never go anywhere without wearing a LUPUS UK wristband - and also have a supply of their best (in my view) leaflet 'Someone You Know May Have LUPUS' in the car, with some in my handbag (which my husband usually carries..). I dish out information 'on behalf of lupies everywhere' all the time. To raise awareness of lupus, for others as well as for myself, is one of the things I do to make it easier to accept 'living with lupus' - I hope you find a way to cope that will work for you. Cyberhug :)


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