To someone with any chronic illness what I’m going to write about may seem obvious, however people without lupus may not fully understand what it’s like and might sometimes comment without thinking.
Before I talk about what you shouldn’t say, the main thing I would advise is to be a friend, be available to listen maybe have a chat over a cup of coffee. Having said that, don’t just talk about their illness, we like a distraction so talk about other things. I did have a friend that also had an autoimmune illness and once they discovered I had one too and advised patients I had a long period where that was all that they seemed to want to talk about. I kept changing the subject and I think they eventually got the message. With my job I rarely get a break from lupus so I love it when friends don’t talk about it.
In general, don't speak about their symptoms in front of them unless you are invited to, let them do the talking and decide how much they want to share with you.
So what should you avoid saying to lupus patients?
The number one thing not to say is ‘but you don’t look sick’. This is something pretty much every lupus patient will have heard at least once. Are you saying we’re faking our illness or exaggerating it? It certainly sounds like that. There are lots of ‘invisible’ illnesses and disabilities so this is one thing you should absolutely not say.
Don’t start a sentence with ‘have you tried’ and follow up with all the weird and wonderful ‘cures’ for lupus you’ve seen on places such as Instagram and facebook. The people that post these ‘cures’ are not medically qualified, they’re often selling something and none of it has any scientific evidence to support it, indeed some of the so called ‘cures’ are downright dangerous. If there was a cure or anything at all that would help lupus, it would be on websites such as ours that are backed up by scientific evidence and research and the content is approved by lupus specialists. Also it’s extremely likely that we’ve read all the same things and (sensibly) dismissed it as the complete nonsense it is as this article explains.
Don’t dismiss chronic illness as you’re ‘just having a bad day’, our bad days usually outweigh the good ones, so we know all about ‘having a bad day’ thanks.
Don’t say ‘oh yes I know all about being tired’ or ‘everyone gets tired’. The chronic fatigue that comes with chronic illness is debilitating and nothing like being tired if you miss a few hours sleep after a night out etc, as this article explains.
If your friend says they’re feeling unwell due to their lupus don’t say something like ‘I know how you feel, I have a cold’, it’s a million times worse to have lupus than a cold and although your friend will feel sympathy for you, to compare a chronic illness like lupus to a cold isn’t fair. As a little aside to this, if you do have a cold then please don’t visit your friend, text or phone them instead. When you have lupus even a ‘simple cold’ can become much worse as this article will explain.
Don’t say, ‘I wish I could stay at home all day watching TV and having a nap’. To anyone that slogs back and forth to work every day the idea of staying home and watching TV or having a duvet day may sound great. To people with chronic illness who are unable to work, staying home all day every day is their life and not something anyone else should aspire to. Trust me, people in this situation envy the people able to go to work every day and would swap places with them in a heartbeat. Along with this you should also avoid ‘you should get out more’, if we’re at home it’s because we have to be, on days when we’re out and about we’re having a pretty good day which has allowed us to get dressed and get outside.
The comment ‘but you work full time, you can’t be sick’, sounds very judgmental. A lot of people with lupus manage to work full time, often (like me) they have no partner/family etc so they have no option but find a way to earn money to pay bills. Also lupus being the way it is, we have good days and bad days, on the good days we manage to work with few issues, but on the bad days it’s much more of a struggle, on the bad days we will need more support than usual from understanding colleagues.
‘It could be worse’ or any variation of that isn’t helpful. It will make us feel we’re making a fuss over nothing, which of course we aren’t, lupus is a chronic lifelong illness which can, in some cases, be fatal.
Don’t say ‘are you sure you need to take that much medication?’ No-one wants to take medication, I personally always try to avoid any drugs and always look at every possible alternative to them, but often the medication is the only thing that helps a patient lead any sort of life at all. We know there’s often a price to be paid for taking it, but sometimes we don’t have any choice. Again I had a ‘friend’ that said I shouldn’t be taking a particular medication after reading that it wasn’t necessary, online of course and despite the fact my specialist says I have to take it.
You may think you should say ‘let me know what I can do to help’, but there’s a better option. Saying that may make us feel we have to think something up so you feel like you’ve helped. Also I’m not sure what/how much you are able to actually do for me, do you want to walk the dog or clean my whole house? It’s preferable to say things like, ‘I’m going to the supermarket do you need anything?’ If you can suggest things that you know would help us it’s unlikely we’ll refuse your offer.
We find ‘what do you mean you have to cancel? We made these plans weeks ago’, particularly upsetting. One of the many problems with lupus is that it’s extremely unpredictable, we make plans when we feel ok, but we can wake up the next day and feel very unwell. We can’t say when this is going to happen, so to try and have a ‘normal’ life we make plans, we hope that our friends and family will be understanding on the occasions things don’t pan out and we find ourselves unable to do whatever it was. We also worry that if we cancel, our friends may stop inviting us to things and we will end up never going anywhere . Please remember this is at least as annoying and frustrating for us as it is for you.
Without doubt one of the worst things I’ve heard said to a lupus patient was ‘you must have done something to deserve this, you’re being punished’. I was shocked that anyone would even think of saying such a thing! We didn’t ask for lupus, we didn’t cause it and couldn’t stop it. Now we have it, the best we can do is try to manage it and learn to live with it. People aren’t ‘punished’ by being given a chronic illness, think of all the tiny innocent babies that have illnesses, they are proof that chronic illness isn’t given to someone that has been ‘bad’. It’s a very cruel and silly thing to say to anyone.
If you’re frightened of saying or doing the wrong thing, learn more about lupus so that you know how lupus patients feel and what they cope with on a daily basis from our website.
Angie Davidson
The content on this blog should not be seen as a substitute for medical advice. If you have, or think you may have lupus, always seek advice on a qualified physician. Find out more in our Terms of Use.
