Just wondering how you explain your illness to people...

[natal1a]

Hey gang

I am off work sick today (the heat has made my pain worse somehow?) and i like posting and reading on here when i get the chance.

I just wanted to see what other people do in terms of explaining their illness to people... for example, i work 9.30 to 4.30pm... occasionally people at work will have things after work, but i never go because b the time friday at 4.30pm comes I'm too tired, and i normally have weekend plans and want to save myself for them. tomorrow, there is an after work BBQ. As i've been a bit off lately i said i wouldn't go, as they needed to know numbers and i didn't want to say yes and then cancel... but I'm finding it hard to explain to people. my really close friends are amazing, and i can be honest and say i need a nap before going out etc etc, but for people that don't know / understand, do you generally tell them you have an illness or do you feel its not their business and make excuses etc?

thanks for reading xx

[LupusAdmin3 LUPUS UK]

Hi natal1a,

Making that decision is entirely up to how you feel, but if you do decide to tell them we have a really helpful 'Employer's Guide' available which may help you to explain about your lupus to your colleagues. I've attached a pdf of the booklet below for you but if you would like me to send you a hard copy in the post so that you may past it around your workplace, i'd be more than happy to do so. Just give me a quick private message or an email with your address and i will arrange for one to be posted out to you. [e-mail]

If you need anything else please do let me know.

lupusuk.org.uk/images/pdf/W...

Best wishes,

Hayley

LUPUS UK

[Lisa6161]

Hi natal 1a, Haley is right. It's your decision to tell if you want to. Employers do need to know if it affects your performance and attendance, but others are your choice. You know if someone is really interested in your condition as they will ask questions about it, after you have given a brief outline. If they just say "oh", they are not interested any further than that. Funny because that same person can bump into you sometime later, see you hobbling on sticks and say, "what have you done to yourself". Because they can see an issue, they listen more carefully after that. Probably shouldn't blame them, after all the word lupus is still unknown by many......but there is no pleasing me, as people who are understanding, seem to think I don't have a life outside of lupus, and want to discuss my probs all the time...!!!!!! You can't win..lol....

[natal1a]

Thank you both for your responses. My managers at work and close friends all are quite understanding.

But I still sometimes find it hard... My team leader asked me if I'm going to the BBQ after work tomorrow and I felt really awkward, I just got all flustered and felt bad, I was trying to say I don't know how I feel and she called me antisocial. I really like her and she said it as a joke and I laughed but I just thought aaargh!

And some of the others in the office have asked me too... I feel like it's flattering and lovely to be asked, but people are going to stop inviting me and think I'm anti social / stuck up etc.

It's so hard isn't it... xx

[IrishLupie]

This is what I use. Now, I'm using it in a college environment with other postgrads who I would be friends with so it may not be suitable but it offers an excellent physical representation of what daily life is like with SLE butyoudontlooksick.com/wpre...

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Sometimes I wonder if we worry too much about what others think. I know I have done in the past and would make myself sick thinking of others reactions to my illness. After my most recent flare up I have decided that really the only opinions regarding my health that matter are mine as I am the one who deals with the consequences/pain etc. I used to get frustrated with comments regarding non attendance to social outings etc as it appeared from the surface that I too was "antisocial"

I have found the easiest way for me is to say due to compromised immune system I need to avoid crowds. It doesnt help in all situations and sometimes I have had to back out of plans at last minute but think about it : they can be annoyed at you for not attending or really annoyed for not being able to come in to work as you have pushed yourself too much. If you put the complaints back on them (only mentally to yourself) you may find it easier. You dont have to defend yourself at all, remember that your life is as precious as anyone elses and your health is your priority.

[Wendy39]

Hello. I have told everyone what is going on, my children aged 6, 9 and 10), my family, friends, boss and work colleagues. But I am a very open person anyway. Wear my heart on my sleeve. Since being diagnosed in November I have had to take time off work for various appointments, like lung function tests, ECHO etc and also when my Dad was dying and it all got the better of me I was signed off for 3 weeks, so I felt I owed it to my boss to tell her the truth. And I was suffering from depression quite badly too and I had a few situations in work where I just broke down, so I just told everyone hoping they would be more understanding of my, at times, erratic behaviour. Luckily, after 8 months of hydroxy most of my symptoms are settling down and it is not effecting my job. You soon find out who really cares and who really wants to know the answer to their question, "How are you feeling?" The ones who don't really listen, I don't tell them the honest answer next time, I just go, "fine thanks." My close friends have been wonderful and often ask when we are on our own, how are you at the moment, everything OK? They listen properly. You soon find out who your real friends are. But like above, it is really up to you. Good luck. PS The Lupus information booklets are great. I have down quite a few and taken them to work.