How do I tell my family?

After months of investigation last Thursday I was told that I had mild lupus and will be put on hydroxychloroquine in due course. I live 250 miles away from my family and they are a family of worriers so I have not told anyone about feeling ill or any investigations I've been having.

When I was 19 I had to tell my family I had a heart condition that required surgery, I think I did this over the phone and I remember my mum getting very worked up. How do I tell her that I have an autoimmune disease for life?

7 Replies

  • Hi I don't suppose there is an easy way to say this. But I think getting your head around Lupus can be very confusing and daunting. EvenI ddon't still get it after 10 years, probably good idea to do this face to face. You could being them things to read, they would be able to see how you were feeling about the lupus. You could also tell them jow they could support you, by doing this over the phone can lead to confusion, even though you probably don't feel like facing anyone.

    Itstnot an easy thing to do, so when you are ready...lots of luck and big hugs.


  • Hi jennawings,

    Would it be of help to you if i sent you a information pack? This has some really helpful facts and advice for newly diagnosed people like yourself. We also have a DVD available which you could maybe either send to your family or all sit down and watch it together. Here is a link with more information and a quick preview of our DVD.

    Let me know what you think and if you would like me to send you the information pack then just drop me an email with your details and i will pop one in the post for you.

    Best wishes,



  • Hi Hayley,

    Thanks for this. I have already received the information pack and it through the information that I found this wonderful website. When I left the appointment with my rheumatologist I felt alright in that I knew what lupus was because I'd done lots of research into on the internet an I was relieved to get a diagnosis. I was told a letter would be sent to my GP with a prescription that I am waiting for and that I had to pace myself to help with the fatigue and go back in 6 months time for a review. A week later, I'm now wondering what exactly is next. My rheumatologist never gave me any direction of where to find further info etc and although I have come to terms with the lupus myself, I don't actually know what happens next. Feel as though I've just been left to play another 6 month waiting game.


  • Hi jenna, normaly you start with planquinel or chloraquine, these are forms of hydroxychloraqine.....they take around 6 months to see any result they are a build up. Your rhumey will ask you in around the 1month marker, see how you are taking them, then you will prob have a 3 month app and then at 6months, at these app you my be seen by your doctor who is dealing with you or the lupus nurse who is part of her team, at these app she/he will go through you illnesx and how you feel and will prob take bloods to monitor you and update things as you go through the process xx this is what i remember happened with me, you may be diff. but i think it may be something the same. At around 6 months they will look to see if your medication is working or not and add diff things to the mix. Good luck

  • You are a very considerate person. Many of us have not had great support from close family and so finally getting to tell them, that we had a name for our very real illness was of great satisfaction.

    Nice that they care and that you are trying to do the right thing by them, A letter might work, as it allows you choose your words carefully. Be clear, and let them know Lupus is not the end of the world

  • Firstly sorry that your dealing with this alone, seems too many of us either have a family that they cant talk to for one reason or another or the medical community have abandoned us to cope alone pills in hand. You shouldn't stress yourself with the idea of telling your family, this is your health and you know that your ok (i presume you are anyway) so tell them in your own time. My mum had a break down and told everyone that knew me i was sick.... It didn't help but i knew she was dealing with it in her own way which was fine by me. Your very lucky to have a diagnosis though Hun, I'm still searching for my answers even though i know its lupus the doctors are denying it since i don't have organ involvement, theyve stuck me in the mixed connective tissue category. Sorry for rambling lol anyway my advice would be to deal with this in your own way first then approach the family when your own head is clear :) they could use this site to get advice on how to help you as well. Big spoons for you x

  • Hi Jenna,

    When I first became ill I went and saw my mother and told her face to face as I felt that I needed to be there to ensure that she fully understood what was wrong with me, answer her questions and also to hug her and try to reassure her that I would be fine (the last was the most difficult!). My mother has always been a emotionally strong person, but the news brought her to tears. So I was glad that I was with her at that time.

    I know that the situation is different for you, but if you can I think that a face to face with your family would be best, if you could. If you cannot be there, make sure that you tell them by phone and not as a friend of mine did to her family by text !!

    Good luck as I know that whatever your course of action it will not be easy, but just try and sound positive as it does make it easier for you and for them.

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