Being diagnosed with lupus changes your entire world. Initially we may be trying to come to terms with the new diagnosis, new doctors, new medications and a new lifestyle and that’s an awful lot to deal with.
Lupus is a chronic illness, which means it’s for life, so the first thing you can show your friend is that you’re there for them for the long haul. This may mean you have to adjust your friendship, so sometimes nights out clubbing may be replaced with pizza infront of the TV and a chat.
An important step in supporting someone is to simply reach out. Let them know that you’re there for them. Don’t shy away from them as you feel you might say the wrong thing, or not know how to react to them, ideally be compassionate and supportive but not overly intrusive.
Lupus is a complex illness, it waxes and wanes. A person can have a low level of pain one day and suddenly lupus will flare up and leave them flat on their back. People with lupus also get very adept at not showing their pain as they don’t want to be a nuisance and as lupus is an invisible illness we often have no outward signs whatsoever, so you won’t be able to tell how we are by looking at us.
Never assume anything, as I said lupus is complex and changes very quickly. Educate yourself even with just the basic facts about lupus.. Having friends/family/colleagues that know some information about lupus is a real comfort, you don’t then feel like you need to continually explain what’s going on.
Being ill can be lonely, often you’re struggling and no-one knows. It can make you isolate yourself, our lives have changed and we sometimes don’t relate to people as we used to. We may no longer arrange to meet up as often, or socialise as much as we did. It’s a good idea to just send a quick text/e-mail or message via facebook etc to see if we’re ok. It takes a few seconds and makes us feel that someone cares, if you text/message rather than call it means we can react to it in our own time and don’t feel pressured to talk to anyone if we don’t feel up to it.
The difficulty you may have is knowing when we need you and when we don’t. Sometimes we’d love some company or a little chat, other times we just want to be left alone to regain our strength. This will obviously be governed by the severity of lupus as every patient is very different, it will also depend on personality, some people will be better at expressing their needs than others.
If the person is experiencing pain for longer than a few hours, consider pitching in to help with daily responsibilities, especially if they live alone. You can help in small but thoughtful ways: "I'll get that for you," or "Sit down and put your feet up." If you offer to help make sure you follow through on your promises.
Some people will be more willing to accept specifically offered help rather than ask for it. If you generally ask how you can help that sometimes makes us feel we have to think of something for you to do. It’s usually better if you can suggest how you can help then we don’t feel that we’re putting you out in any way. You could say “I’m walking my dog shall I come and take yours, f you are collecting your children from school ask if you could collect theirs too. Maybe say I’m popping to the supermarket what can I get for you? Or you could make an extra portion of food when you cook and pop it round to them.
The following are very important things to try not do.
Don’t say “Have you tried…?” We are experts in our disease, we will have tried everything known to man from conventional medication to yoga, we will know what works and what doesn’t. The other problem is that there are thousands of scam websites and pages on the internet preying on the chronically ill with everything from herbs to spells with one object – to part desperately sick people from their money. We probably speak more to our doctors than our friends so we’ll be up to date with any treatments that are available. If there is a new approved treatment or a cure for lupus it would be on our website and all over our social media instantly!
We know you care and want to help us, but unsolicited advice is just that, unsolicited and could in some cases be dangerous.
Don’t question the severity of someone’s illness. Worst still do not intimate that it might be all in our minds. It’s probably taken us years to get answers and often dismissed by many doctors before arriving at a diagnosis. To have someone question the legitimacy of our illness or the pain level we are in is simply insulting.
Don’t take things personally. We may cancel on you a lot, we don’t hate you so don’t take it personally, we are totally governed by our lupus and how it’s behaving and that may change from day to day, or even hour to hour. Definitely do not say ‘but you were ok yesterday’, we probably were and we may well be ok tomorrow, but sadly that’s the way lupus is - unpredictable.
Try to be flexible, maybe you can’t do what you had planned but perhaps you could offer to visit them instead and have a little chat? Maybe you could bring a takeaway to save them the effort of cooking. Again, if they say no don’t take it personally they may be feeling very sick and unable to participate in anything.
A friend and I have come up with something that we agreed on years ago. If I (or she) doesn’t want to go to something we simply say ‘no thank you’, no explanation needed that’s the end of the conversation. We did it so it saves us going to things that we don’t like, but could be used in this situation too. It will save hurt feelings and for us to feel pressured when we’re feeling unwell, we actually laugh when we do it so it definitely works.
Having said all that, please keep inviting us to things, even though we may sometimes have to say no we still like to be included and know that people care enough to want to see us.
Don’t talk to anyone else about our disease. Some people, like me, have no problem with everyone knowing, however, just because we’ve confided in you doesn’t necessarily mean we want you to disclose the information to anyone else. This is particularly relevant in a workplace, often we don’t want everyone at the office to know. It’s best to double check before saying anything.
If you have a friend/colleague/family member with lupus and you’re unsure how to help them please feel free to contact us.
Follow social media accounts that raise awareness about lupus such as ours @lupustrust - facebook/instagram/twitter
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.
