Changing my life

I'm 17 yrs old, and was diagnosed over a year ago with SLE. Its awful when you tell people what you have but you can tell they have no idea what Lupus is. Though I've been coping fairly well to the life-altering changes i've had to make, its like everything hit me at once about how i can never return to the lif i lost, and recently I had a 2week-long breakdown, much to the dismay of my teachers and friends.

Now that i'm back I just want to get on with it, but the teachers look at me like i'm about to drop dead, and my friends want to know why i've been off, but i don't want to be the person who moans and groans about their health issues. My head teachers have recently told me that if i don't get my act together i'll be kicked out of school (politely of course).

Its making me realise that those of us who do have chronic autoimmune diseases are never really going to be understood by the rest of the populus, and unfortunately that's a burden we have to bear. I don't want to tell my friends about my crappy disease, because they know me as a happy cheerful person, and i don't want to ruin the person they know with depressing stories of my disease.

Even though this disease has come at the worst possible time (in the middle of my A level examinations), I'm beginning to see that its now part of who I am, and though I hate the fact that i know have to declare my state of health on every bureaucratic form, having Lupus has given me a unique understanding and insight into the life of one with a chronic disease: Its changed me for life, but in a different way- its given me empathy and experience, which has helped form who i've had to become: a much stronger person.

13 Replies

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  • Insperational comments that hilight what we all go through, daily. Keep going you are not alone.

  • thanks Jack, I'm beginning to realize more and more that i'm one of many every day.

    zamtacz x

  • Hello Zamtacz

    You show great wisdom and insight for one so young. The fact that this curse has come at the exact wrong time is because it is partly due to what is going on in your life. In as much as your defences were at a low ebb.

    To coin a phrase you have to play the cards which you have been dealt.

    And plainly you have been dealt a crap hand, but as you say those who dont know about your condition have not idea how crap. Then again there is a world of seriously crap illnesses out there and luckily most of us will know little of what fresh hell some of those others are dealing with.

    The things we cannot change we must accept.

    I was older than you are now when my health failed but like you I defined myself as a dynamic fit and happy person. Losing the things by which I defined myself was a painful process and I resented the illness for this ( and still do)

    But like you the image I had of myself before is what helped me to become that person again. It took a while, but I got there. I hated looking ill, call me vain, but I make an effort to stand and sit properly -which in turn make me breath better and puts less strain on my back etc. Small victories perhaps.

    Remember who you were, after all that is who you really are,

    Love to you, you are not alone. Martin.

  • Martin, Thankyou for your support. I suppose how we deal with things like this is how we shape ourselves. You're right- when i lost the person i thought i was, i felt incredibly lost in everything, and floundered. But I feel I have now got a bit of a grip back on life- small victories as you say- we are the survivors after all.

    Zamtacz x

  • I Think you have what it takes to come through this. But be warned there will be days when you will feel like you wont. Pain is a mind-altering substance and it is easy to feel either victimised or martyred - which you are not. Life may appear cruel when it is infact callously indifferent.

    Celebrate the small victories, accept any and all support in the spirit is it given and know that the war is a long one. Above all know in your heart that you will get your life back.

    PS. Being thanked feels very nice. I have 20 years of tips philosophies and strategies for dealing with this. Feel free to call upon me if you need an ear. Martin

  • haha glad to hear it Martin, and I won't hesitate to call upon your wisdom :D zamtacz

  • Yes you have been dealt a crap hand with one so young.

    But you also got to let people know what you have,and help them to understand why sometimes you are not what you were.

    It will surprise you how understanding they are.ask Lupus u/k to send you some leaflets this will also help.

    If you would like to contact a young Lupus sufferer again Lupus U/k will give you the contacts number.

    I wish you well in all that you do,I to was lost and floundered when i was told ,but you do live your life, but perhaps a little different

    Love & Sunshine

    Janx

  • Thanks Jan,

    I know you're right, i just don't want to complain, because i know if i begin, I won't be able to stop talking about it, and I don't want to come across that way. I guess the venting is what this website is for :)

    Zamtacz

  • Hi Zamtacz,

    I am very impressed by your attitude but not impressed by your teacher's attitude. The comment about being kicked out of school (although put more politely than that) is not good and doesn't, in my view, show much understanding. Lupus is a serious, chronic condition, as you know, but do the other's know this? I know the feeling of not wanting to talk about it in case people think you are moaning but people just have to know otherwise one is misunderstood. Its also only fair to tell others about it. There is a difference between constantly moaning and confidently educating others.

    I have had lupus for 18 years and I used to keep quiet about it and pretend that I was coping but as time has gone on I have been more open and it is better. I have just had a LUNCH4LUPUS charity meal and I gave a short talk on the illness and also about how it affects me. It went down very well!

    My heart goes out to you and I wish you all the strength in the world in dealing with this. Big hugs from me.

  • Thank you very much Jude,

    What tends to happen in these situations is that we become the specialists in our own diseases, and I really should be telling them. I suppose in a way, its part of recognizing what I have, and that when I explain this to others, I won't be in denial anymore, but its tempting just to ignore it as another part of my life, rather than accepting it as my new life. I'm sure I'll get there eventually.

    Luckily I have one very understanding asthmatic teacher, and though he is not a lupus sufferer himself, he has first hand experience at how chronic diseases can really change the course of your life in a way that isn't necessarily planned.

    But yes, awareness is an important issue- it seems they are a lot more aware in America than in England, which is something us Brits must d something about...

    Zamtacz

  • Aint that the truth. Mention Lupus to someone from the states and you then carry on a conversation.

    Say it to a Brit and you get blank looks.

    I just signed onto Dawns FaceBook page. Lets get the word out.

  • Hi Zamtacz,

    i am not a lupus sufferer myself but my mother was but she never discussed it with anyone not even family members,she was diagnosed in 1998 also told by specialist that it was triggered by the birth of her second which if so she,d had lupus for 41 years before diagnosis which would explain why she had so many problems,i only wish she,d talked to us about it made made us more aware of this dreadful condition,so please talk to your friends and family let them know what you are going through that is the only way you will raise awareness to this dreadful condition.

    big hugs cath x

  • Hi cath,

    I admire your mother for her tenacity though not talking about it at all is rather extreme. I do talk to my mother about it, and talk to very close friends sometimes, but I always worry not to ruin the conversation, or give off depressing vibes. I suppose I may worry about how I'm coming off a bit too much, but putting off people is my worst fear, and I'm sure they'd deal with it well, but being honest about this has always been quite an issue for me, perhaps because I'm one year into the diagnosis, and therefore still in subconscious denial. I suppose I see my life divided into sections, and I really don't want to mix the depressing Lupus part with my fun-loving friends and social life

    Zamtacz

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