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Diagnosis after 10 years

I had suspected I had lupus for a long time, but the doctors kept telling me I was way off the mark. Although several members of my family have lupus they said it wasn't Hereditry. My uncle died from lupus after his kidneys failed, his 2 daughters have it, now I have a positive diagnosis and my younger male cousin has just found out he has it to.

If I hadn't took advice from a nurse who recommended I should change doctors then I think I would still be going around in circles. 6 weeks after I joined the new practice I got the results. Although deep down I knew I had lupus it was still quite a shock and found it very hard to deal with, thinking my life was over.

I know I have to adjust to having a chronic illness and it will take for me to understand what my body is telling me, but I'll get there.

The worst thing is that most people don't have a clue what it is and they look at you and say 'you look fine' but you feel like crap.

I have just started a new job which is going to push me to my limit over the next few weeks, but I don't want to start telling everyone about my lupus, the first thing people will think is that I'm going to phone in sick all the time, they made the wrong decision hiring me. I've been ok for about 3 months but I think a flare is starting. Working 10 days straight is maybe not a good idea.

3 Replies

Hi Scooby

Having a confirmed diagnosis of Lupus can certainly be a mixed blessing. My heart goes out to you, especially, when you have experienced Lupus so savagely within your family. My daugher displays familiar characterists of Lupus, although everyone else poo poo's it and my younger sister has had Fibromyalgia for years is now baffling doctors with Lupus like symptoms. Maybe future research may shed more light on the hereditory nature of the desease.

I can appreciate your reluctance to disclose your diagnosis to your new employer. Some employers are better than others when it comes to best practice and sadly the prejudice you fear can be very real for us lupies due to the lack of awareness. I urge you to weigh up the pro's and con's before reaching a decision on whether to disclose or not, though. The citizen's advice bureau may be a good starting point. They can help inform you of your rights at work and hopefully you can then make an informed decision on the best way forward with your employer. Obviously, I am unaware of what you do for a living, but if you are aware of difficulties you think you are likely to experience in this job, (eg 10 day shifts) it may be an idea to address them early on rather than wait unitl things to go wrong. It's very positive that you have remained flare free for three months, but here is help out there if things do get tough. I wish you all the best and hope you keep us informed.



I urge you to go to the link below about 'spoon theory' -it is a brilliant explanation of what it is like to have lupus and also to not look ill- i constantly have people saying how well i look- which is nice on the one hand but also causes problems when you are actually feeling crap and need help, or can't concentrate enough to follow a conversation etc etc:

all the best, sheila


Hi, Scooobydoo!

I know that this is a very difficult time for you as you try to understand how having lupus will affect your life and your work. I remember feeling relieved when I was diagnosed because finally I had an explanation for all of the symptoms I was experiencing. After feeling relieved, I think I passed through several stages including anger, denial and grief. Counseling helped me to recognize my feelings and eventually to accept the changes lupus imposed on my life and my family.

Now, fifteen years later, I believe that, in some ways, having lupus was a blessing to me and to my family. It caused me to stop working and to spend so much more time at home with my four children throughout their childhood and adolescence.

I think that you are smart to hesitate to share your diagnosis with people at work. You are not required to tell anyone about it. In fact, your right to privacy is protected by law. Especially, since lupus is so hard for others to understand, I wish that I had not told colleagues about my diagnosis. I think it caused my colleagues to expect that I would not perform as well at my job. I had to put up with a lot of comments about how sick I looked or didn't look.

I hope that this website will be a place that you can find support. It helps to know that you are not alone.

I wish you all the best in dealing with everything. If you have more questions, ask...any time. If you are frustrated, air your feelings here on this forum. No one else understands like a fellow "lupie"!

Take good care of yourself!


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