Why me?

I am 23 years old, have lupus and Sjogrens syndrome and was diagnosed at the age of 18 (although I believe that I have had it for many years prior to that).

Recently, I am feeling a real sense of injustice and loss for a life that I should have had. This is made worse by the fact that I have never been offered any help or support by health professionals.

I'm just wondering whether anybody else feels like this? I often fear that this is it for the rest of my life and worry that I will never have a child or 'normal' family life.

I am struggling at the moment and just wondered whether anyone else feels like this and what they do to bring themselves round?

11 Replies

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  • Hello Jessie,

    I am 72 and been a customer of lupus for over 50yrs. I tell you that so you know that Lupus is not always a death sentence. Lupus can be a lonely disease and I have only met three or four sufferers! Like you I received no other support apart from a great GP back in the '70s but a few years ago was introduced to a Rheumatologist who at first was very caring but has lost interest. However my present GP is very good and offers support when he can. Tuesday he spent three quarters of an hour putting my mind at rest.

    You have joined Lupus Uk...a good idea. The magazine is full of information, and of course you can come in here and off load.

    Try and keep a diary of what happens to you, when and how long the symptoms or pain lasts. Once we feel better is is easy to forget how long you suffered. It can be a great reference for you.

    If you have a good GP make a list but don't floor him with it, and try not to tell him you read something nasty on the net, as most doctors worry that you have misinterpreted info. They have studied,and hopefully know so build up a trusting relationship with your doctor and rheumy. After that, there is not a lot else.

    If your lucky your hospital may have a lupus nurse.

    I recently had a long drawn out flare, and I also felt as if there was no one out there to help. If there are those on this web site who have families and support groups you are fortunate.

    When my GP came and talked I felt better. Steroid inj given and I feel much better. I am lucky that I have carers looking after me.

    These days there is no reson you cannot have a normal life, marry and have children. It was different back when I was given a death sentence that hasn't happened.

    Go out and enjoy your remission. If you have to give something up, find something new you can do. It is not easy, but you find your own level and how to manage it in time.

    Sorry this is a bit long, but I hope it helps you to realise you are not alone. You have Lupus UK ..

  • Hi Jessie,

    I was so sad to read your post and hear how down you feel,you are so young and should be looking forward to life, it's so unfair, isn't it. You don't say if you have family or friends to support you, and even so, lupus can be so hard for non-sufferers to understand, which is why sites like this can help if you're feeling alone.In practical terms, managing your illness can seem overwhelming and a bit daunting at times but you will manage it if you can get some support.I am now 53 and have probably had lupus/vasculitis since my mid-teens, although I wasn't diagnosed until 21, when I was put on steroids, which I still take to this day.It hasn't been easy, by the time I was diagnosed my kidneys were so damaged dialysis was inevitable, but fortunately I had a transplant in 1987 which is still working- just about!That meant I was able to have my beautiful babies, now nearly 26 and 25, both problem free pregnancies and births.Unfortunately, I didn't have a very good consultant looking after me, I wasn't actually seeing a rheumatologist at the time, just the renal team, and when I had a big 'post-partum' flare after my second child I wasn't treated for it until 18 months later when I was gravely ill and had to have very aggressive treatment which was actually more damaging long-term than the illness.The last 30 odd years haven't been easy as I said. yes, I have struggled and there have been times when I've sunk into despondency and thought 'why me?' but mostly I have just accepted that this is my life and I will get on and live it as best I can!

    My advic, for what it's worth, would be that you need to be under the care of a medical team who really understand lupus, be that a rheumatological consultant or a specialist in lupus and associated illnesses, because the treatment you will get can make a vast difference to your quality of life.You don't say how severe your symptoms are or which health professionals you may have seen, but someone has made the diagnosis and so at least your G.P. must be aware.If you are not already seeing a consultant, request a referral, explain your anxieties about the future and seek re-assurance that you are receiving the correct and adequate treatment.At the same time, find out yourself as much as you can about lupus and how it can be managed, to empower yourself and make well-informed decisions about possible treatments alongside your doctors.There is so much more information available these days, when I was your age it was almost impossible to do the kind of research we can do so easily via the internet nowadays Try to build up a good relationship with all your doctors , you must have doctors whom you trust and have confidence in.

    I hope I haven't sounded too serious and doom and gloom, because despite everything, I was still able to have my children and a fairly' normal' family life, as have lots of other sufferers. I just wish I'd been better informed when I was younger re. potential effects of taking steroids and cytotoxic drugs long term,that has personally been my main problem.

    Please try to stay positive, as Dimples1 said, diagnosis is not a death sentence, and it is possible , with certain modifications of course, to lead a relatively normal life.I wish you all the best.

  • Hiya Jessie

    I'm 40 got diagnosed with hughes syndrome this time last year then after lots of tests found out I have lupus, rheumatoid arthritis and sjorgrens, I can categorically say I've had these illnesses if not all my life but definitely from the age of 11, I always just thought the exhaustion I felt and aches amd pains was just life now I have a diagnosis I feel nothing but relief that there has been something wrong with me and that now I can start treatment, I understand its totally bewildering for you but one thing to be thankful for is that you've found out at a young age and with the right support you can manage this and familiarise yourself with the illness, if you're not happy with the care you're getting speak to your gp and tell them how you feel because it is really important that you have a good medical team around you for support, please don't see this as a life taken away but see it that you know what's going on you know what you have to contend with and you know there's an explanation as to why you're feeling the way you do

    hope this helps

    Bev

  • Jessie,

    I am also "up there" in years....71. I was diagnosed 3 years ago. My Dad had Lupus, so mine is genetic and laid dormant for most of my life. When you get older, you naturally can't do what you used to, but the Systemic Lupus has changed my life as well, dramatically. My grandkids live 1000 miles away and very time we make plans to visit, my labs are not good. However, I play tennis 4 times a week,and swim every day. What YOU need to do is YOU take over and not let the LUPUS take YOU over! You have to push yourself to continue your life even when you are too tired to do so. I't s a battle - we all know that who have it. But unless you get a mind set that you won't allow Lupus to take over, and continue on with your life as best you can, you will be sick. You don't have to be sick - you don't have to give up anything! You have a ton of support here - we all feel what you feel - get a good doctor that's compassionate and understandin, get your labs done regularly, and FIGHT! YOU ARE GOING TO WIN THIS BATTLE! I promise!

  • I know just how you feel about injustice especially for something which was beyond your control.

    Quite a number of years ago I was given steroids for an overactive thyroid gland and some years later I had to have 2 hip replacements due to avascular necrosis (blood not circulating round hip bone) caused by steroids. This was quite successful when first done but now after 17 years I am now experiencing problems with my hips and can't expect another operation. Needless to say I feel very angry that due to circumstances beyond my control, I have been placed in this predicament. So now it is a case of making the most of it and taking life as it comes.

  • Hi Jessie

    Your deeply felt post vividly reminds me of how I felt in the many years before I found lupus uk and this wonderful forum.

    You've got some great replies! I'm 61, and am also able to look back on lifelong lupus (I was diagnosed as an infant). And I'd agree with the jist of everything the others have said so well above. I've managed to live a mainly happy adventurous & fulfilling life despite the inevitable low feelings of injustice, loss, depression & anxiety that come naturally with our condition.... and I'm now amazed to find myself enjoying a relatively good year of feeling better generally than I have since my 20s....and this is thanks to mycophenolate, which was a new treatment back in 2000. So, take heart: lupus is a relapsing & remitting condition, which is finally becoming even better understood. New treatments are in the pipeline. Your generation really could well see great advances, and be part of big positive developments.

    I'll just add this:

    our local lupus uk support group (Cambridgeshire) publishes a seasonal newsletter, which usually includes an article by one of our young members. She writes really good pieces, which you might like, and find helpful. Also, the rheumatology clinic I attend has been working hard to give younger patients more support, including opportunities to meet up & discuss stuff that especially matters to them. Even if your local support group or rheumatology clinic aren't providing these opportunities, could there be something worth hooking up with in a region near you? and, finally: if you like to read, check out the lupus uk book store & lupus literature generally....I'd recommend especially 'talking about lupus' by triona Holden & dr graham hughes...it was published in 2004, so is slightly behind (eg mycophenolate is in the last chapter re the future) but it's almost as good as sitting down with triona for a series of really good chats....she has a lovely way with words....and gives good advice re lifestyle management too.

    take care...hope to find more from you here on forum

    XO

  • Hello dear i am 29 and was diagnosed im 2011 . I didnt have a clue what lupus meant. I had my son im 2012 and after a month lupus gave a big knock on my door. It has been like that ever since. I have asked myself why must i be the one going through this unending pain. It can be a roller coaster ride. But keep believing never give up. It is not an easy road but we re all here to support u.your not alone never feel left behind. Trust in God. We shall overcome. If u like comedy watch citizen khan or mrs brown it will put a bit of laughter in ur system. Take care. XX

  • Hi Jessie so sorry to hear that you are struggling. My daughter is 22 and was diagnosed at 19 with sle. At first she was very ill and depressed. But with support from family, friends and amazing professionals she has come to accept her condition and try and get on with her life. She recently had a set back when her lupus was very active and her kidneys were under attack but she had fortnightly treatment which we hope has worked.

    Please don't despair. If you feel you need it ask your gp to refer you to counselling or to a consultant at your local hospital. This website is good for support and information too.

    Take care and don't be afraid to ask for help and support. :)

  • So sorry to hear you are struggling, I too was diagnosed at 18 after being ill from the age of 15. I had an awful time accepting it and feeling so different and excluded from my peers but as the years have gone on (I'm 32 now) it's something I've come to terms with, it's part of me and made me the person I am today. I am lucky and had a few years of fairly good health and I was lucky enough to have two beautiful daughters in that time with illness free pregnancies, I'm having a flare at the minute but I try not to keep all the emotions locked up inside now when I'm down, I talk to family/friends or use support forums if I need to just vent. I hope you manage to find a way to deal with everything, it's definitely not the life I imagined for myself but I have definitely learnt I can live a happy life alongside the illness. Xx

  • Hi Jessie_2014,

    I'm sorry to hear that you are feeling so down and that you don't feel supported by your health professionals. It might be worth getting a referral to a specialist lupus centre? If you let me know roughly where you are in the country then I could give you information about any closest to you.

    In addition, if you are anywhere near London, you might like to come along to our meetings for young people (16-26) with lupus. It's a great place to speak to other people with similar experiences and make friends. lupusuk.org.uk/young-people

  • Thanks for all your messages of support. It means a lot. I have been referred to a different hospital and am waiting to find out when my appointment will be so fingers crossed I will feel more supported. Thanks for your comment Paul_Howard, unfortunately I am nowhere near London or I definitely would have been interested :) x

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