Still coming to terms with my Lupus

Hi, I'm still unsure about how I feel about having Lupus, sometimes it's not really an issue, but then when I start to feel the pain or get reminded of my limitations then I get sad and angry. I've started to realise that my family and friends either 'forget' that I have this unpredictable disease or when people ask me how I am, they visibly look bored or disbelieving when I tell them what's been going on lately. It's frustrating as I don't know whether to lie and give a standard "ok thanks" answer or to tell the truth about how I'm feeling or what I'm going through. I know I need to pick and choose the right people to be honest with but I still feel like my close friends still don't understand me. Anyone having similar issues?

7 Replies

  • yea know what u mean i always tell it how it is .but when people say youre looking well i have to remind them thats only on the outside .afraid this is all part of lupus life take care lupus jon

  • Yes, having exactly the same issues. Someone even said to me once 'You've always been a bit odd'. Charming!

    I wonder how 'odd' they'd be if their whole life had been turned upside down from an early age, and they then had to deal with the consequences of that plus the limitations of the disease progression in later life...

  • People always tell me i look so well little do they know i feel 100 years old sometimes. Only my close friends and family are aware of my problem but i'm not sure they really understand. Although they are caring. x

  • I get cross too, with my family and myself!! I have Discoid Lupus and on the whole think myself lucky (it could be worse) the problem is that my entire life revolves around being outside (i have a smallholding). I have always had a problem in the sun but it has got worse over the last three years and 6 months ago I was diagnosed. Today I thought 'ah sod it' I will just get on with it and work in the shade, but as the day heats up the itching begins!! Then I feel cross with myself because I am limited in what I can do, I feel useless because I cant make the contribution to our life that I want to, I am a bit of a martyr and because of that my family dont really get it (my fault I know) then I get cross with them for not understanding. When people do ask, I say, Im fine (im not im just stubborn!)

  • I know how you feel, and even after 13 years, I still get frustrated at my limitations. I know what I am able to do and things that I really cant, but at times I think, to myself how unfair it is that others dont even think about gardening, washing the car, going for a long walk. But I know I cant. Over the summer, I got so frustrated at the state of the garden, I started weeding and within hours, my hands were swollen, my back was in serious pain too. I knew before I started that I wasnt able to do it, but I still did it.

    What I am trying to say is that it doesnt matter how long you have had Lupus, there are always going to be frustrating times and you feel down about the things you cant do, but you have to remind yourself of the things you CAN still do.I have lost friendships because I have Lupus, people think that you dont want to spend time with them when you cancel going to see them. It is a time where you find out who your real friends are. I personally, dont discuss it with many people as they dont understand and I am fed up explaining that fatigue is not from a lack of sleep!!!!

  • I think it's very hard for people to understand Lupus if they don't suffer from it, some days I feel well but within a few hours I can feel weak and tired and I know I have let people down at short notice and that must be annoying, on the other hand I have lost friends who just can't be bothered to listen or even ask how I am, it's a shame because when you have this illness you really need the support. We just have to appreciate the people who do care a bit more. :):)

  • As above, think for people who do not suffer from Lupus they do not understnd how you are feeling, from one finger joint that is so very painfull but to onlookers there is nothing wrong, and very hard to explian how tired and frustrated it makes you. I try to fight it, as dont like my own body deciding what I can do, it is such a varied ilness, but having found this site, nice to be able to talk to people who understand.

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