Does Lupus define your life?

Hi! I'm Katie and I haven't been on this blog very much at all since being diagnosed with Lupus as I was angry and 16 and didn't want to associate myself with other people who had Lupus because I felt like that wasn't who I was.

As I've gotten older (and weller!) I'm 20 now and learning to embrace my lupus filled self and the stretch marks on my skin from all the body changes. I want to own my past and grow from everything I went through. From facing near kidney failure to the narrow escape of needing chemotherapy (and suddenly having to think about my potential fertility at 16!)

When I was mega poorly (hopefully you'll find out more about this as I've wrote a blog post for this forum about studying with Lupus which I've been told will be shared in the next couple of days!) Lupus consumed my whole life. How could it not? I was sick every morning and my lovely teenage body was swollen and covered in marks- and I also got acne yay. When I met people I almost wanted to explain to them why I was this shell of a person- and would instantly pull out the - I have lupus and recently I nearly could have died- card.

This didn't make me many friends.

And then when I got better I wanted to distance myself from the illness as much as possible. It doesn't define me and it's not who I am. And I kind of put it from my mind. Aside from having to take medication every day and still going for regular bloodtests ha....

Now I'm in a happy place. Lupus doesn't 'define' me but it's part of who I am and my story and heck it's very much going to be part of my future when I have to go to the hospital like ALL the time before I try have any babies. (So like yeah they could have deformed ears idk...)

What do you think? Does Lupus define you? Do you embrace it or try to get away from it? I imagine being on this forum you aren't trying to ignore it all together!

Since I embraced my illness I'm the disabilities rep at my college at university, and I've done a 5k run to raise money for Lupus UK. I want to do so much more. I don't want to be resentful. Lupus is physically part of my body. My own body being a bit confused. It's not a monster that needs to be beaten. It's something that needs to be nutured and cared for.

I know I've gotten a bit waffly towards the end but yeah woo. :)

13 Replies

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  • Hi Afia, I'm sorry to hear you are still in the midst of it all. I was very lucky that my condition was stabilised within a year of diagnosis.

    I think being so young is really hard because you get that carefree-ness taken away from you a lot sooner than anyone else would. and because lupus isn't a well known thing it's difficult for people to understand.

    I hope that things stabilise for you <3

    For me- physically- (apart from ACTUALLY having to get loads of sleep now instead of being able to do all nighters working/ going out!) I don't even feel like I have it anymore. Oh and needing to pee a lot!

    At the moment for me it's purely emotional. And I'm not sure how well I could embrace it if it was still physical. I didn't at the time!

    Good luck with everything xxx

  • lemoncheese, lupus defines my life by all the people in my life they don't ask me what i have been up to they ask me how am feeling, that because that all iam these days is the sick sister ,mum ,grandma, wife. lupus took my job and my hair and my looks. my body looks like a battle field. I just wish someone would ask me hows my day been what have i been up to yes it define me as I am not Ann the career girl who had ambition and a successful future, now i spend most of the year in hospital or ill so that to me is what those who love me see the illness first,then i think then they see me the person.

    how wingey am i ? healing hugs lemoncheese

    luppychick x

  • Hi luppychick, I understand that- Lupus was all I had going on for a really long time. It's certainly not whingey! Have you told other people how you feel?

    I used to get annoyed when anyone tried to talk to me about 'beating lupus' and wolfs and butterflies. I didn't want people to disassociate the illness from me because then I felt like I would be carrying round a parasite for the rest of my life. When really it's just ol' me. (I realise now this is just a coping mechanism for people and that's fine!)

    But I told people this and no one spoke to me like that anymore. Everyone was fairly disinterested when I was ill I have to say, apart from my mum- you sound like you have very caring family and friends!

    hope that you feel well and that things get better <3xxx

  • Luppychick You described how I feel, career gone, health gone, interesting person gone -all that's left - sick relative - mother, nan, partner sister etc - people just ask 'how' I am - I don't feel that 'who' I am matters anymore!

  • Absolutely do not allow this disease to define you! I tell only those who need to know for an exceptionally good reason. Unfortunately, in my long experience, being really open about it causes others to view us differently and in a way that's not ultimately good for our sense of well-being. That said, good on you for repping at Uni and your charity run! x

  • I caught myself thinking about it the other day (and it inspired me to write this post!) when the Lupus UK facebook page encourage you to post #lovinglifephoto 's to raise awareness and money for the charity. I obviously mentioned in the post that I had it and someone who I met a few months ago messaged me saying- I didn't know you had lupus!

    And that's when I realised it didn't define me anymore. And why I felt like it was okay to keep sharing it with people at the right time. Because people see me first and lupus second.

    Having said that it was something I told my current boyfriend within a week of us meeting.

    To get everything all out in the open! This was over a year ago now. And I think he forgets I even have it most of the time :)

  • ++ thank you tigerlily4 I hope you are well! xxx

  • Hi lemon cheese, agree with all replies so far. When I was diagnosed, I was relieved to finally be taken seriously with my health issues. Once that passed, I then had the reality kick in that, this is for life. I'm much older than you, but still felt robbed of my quality of life. I have spent years never meeting, or talking to another lupie. My family drove me mad with their lack of understanding, and I just don't talk about it anymore unless I have to. So I am a regular to this site, not because I want to live in 'lupie land'. It's because I get so much advice and understanding from fellow sufferers, who really know what I mean. At your age, it's not good to be plagued with this disease, but you have the right attitude, and that can only be applauded. But now and then you may just need to pop in and have a chat with like minded people. Well done so far, I look forward to reading your blog.

  • Very well said, I second this.

  • Hi 6161 I understand that! I think I had the advantage in a sense (ha) that being so young my parents were still very much involved (my mum at least!) and I always had my mum around who- didn't really understand to be fair .. at all! But tried to. And when I let my friends in a little bit more they began to understand too. my new friends anyway. my childhood friends TOTALLY avoid the whole issue but that's fine I let them off ;)

    Right now I'm happy and 'healthy' and I will always then have this positive time to fall back on emotionally if I get poorly again. To know that I have a light at the end of the tunnel to reach for!

    Thank you for your support I hope you are well <3 xxx

  • Thanks lemon cheese I so have a supportive family and I applaud you for the excellent advice my son and husband are taking me out for mothers day I will talk to them over dinner for someone so young coping the way you are is inspiring.

    Healing hugs

    Luppychick x

  • That's really lovely to hear! I feel like I should do more for my mum- she has me to deal with and my 18 year old severely autistic brother! But she powers through and has an awesome job and is generally awesome. So she inspires me! I'm sure your strength and desire to be your own person will inspire your family too!!

    xxx

  • Hi I was diagnosed nearly twenty years ago and have never let Lupus win and have certainly never viewed it as an animal or enemy I have seen it as a learning curve and lived my life despite it. Ok so my body is different to other and I am bald again but I do tend to look at the positives, I save a fortune in hairdressing and don't take ages to get ready to go out and my hair does not get messed up under my crash helmet! Yes I have spent a lot of time in hospital and endure lots of pain but I have two wonderful children and am very lucky that I have all the wonderful friends I have.

    I was lucky to have a very good and supportive doctor from the start which makes a lot of difference, I also had the spoons theory pointed out to me quite a few years ago so when I felt people abandoning me I passed a copy of it to them to read it helped them understand what I was going through.

    I suppose I am very lucky to have the positive nature and sense of humour that I have as I tend to laugh a lot of things off, some may find this strange, but I am a biker and with a bald head surrounded by men who shave theirs it was easy to accept mine as I would run my hand over theirs and say you missed a bit :-) and I have found ways to accept things like that. My walking sticks are decorated, and I am a social secretary of a club so used this as an advantage to arrange fundraising days.

    Despite having to give up work I have now been able to start a voluntary job for two short shifts a week, I lead a full and active life doing a lot of motorbike rallies and making contacts all the time. Ok there are lots of things I can't do but there are many that I can, I do wonder if you could benefit from talking to someone when you do have your down times, but I am glad to see you are in a good place right now.

    Keep your chin up sweetie

    Madmagz x :-)

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