When you get diagnosed with an incurable illness some people feel the need to give you unsolicited advice and with the advent of ‘Dr Google’ they also seem to have suddenly become experts on your condition.
Over the years I’ve heard all sorts of random things that are supposed to help lupus and even cure it! You should be very wary of these suggestions, especially if they were found online. Often the people pushing a ‘special’ diet or ‘miracle product’ have a vested financial interest in it (in other words they’re trying to sell you something). This is particularly cruel as people who are in a lot of pain can become pretty desperate and try anything. As you can imagine some of the recommendations can be downright dangerous (some herbal remedies in particular can interact with medication), so check everything with your specialist before trying it.
Whilst some things such as a good diet and exercise definitely do help, weird and wonderful diets don’t cure lupus (nothing can currently cure lupus) or even help it, neither does giving up coffee, drinking ginger tea, eating a carrot a day, or any other strange ‘facts’ people come up with. Even better are suggestions like “you just need to snap out of it” - if only! If there was something that cured lupus you can be 100% sure I’d be doing it and our specialists would definitely be recommending it.
Amongst all the advice I’ve heard. I remember what Professor David D’Cruz said to me when I finally got diagnosed and it was a very good piece of advice. He said “be kind to yourself, in the scheme of things does it matter if the hoovering needs doing?” That was a nice way of pointing out to me that I would have to start prioritising things and that maybe I wouldn’t be able to do as much as I had previously. Think about it, surely your health is more important than a sink full of dishes?
Here are a few other pieces of advice that are actually sensible and worth thinking about:
Put yourself first, yes you read that right – first. That means above your children, your partner, your friends, family, everyone. That is likely to be an alien concept (especially to mums), but if if don’t look after yourself and your health you will be of no use to anyone else. So take time to relax and rest when you need to. Start to say no, people need to learn that you can no longer try to please everyone. Also don’t be afraid to change or cancel plans, lupus can flare with no notice.
Know your limits and don’t try to push through them as there is usually a price to pay by doing that.
Eat healthily, your body needs all the help it can get.
Try to keep active, whether that’s a formal exercise programme or just walking, the more active you can be the better you will feel.
Focus on what you can do, not what you can’t do and concentrate on the positives, not just the negatives in life. We all have moments where we struggle to see the positives, but try not to allow them to overwhelm you to the point where all you feel is despair. Focusing on pain isn’t going to make it any better. Before you fall asleep or upon waking up, try to think of at least one good thing or one thing you’re grateful for.
So how do you deal with the unwanted advice?
One of the reasons people feel they want to offer advice is that they feel helpless when they find out you have lupus, this is often their way of trying to do something practical so maybe we shouldn’t be too annoyed with them. On the other hand there are the people that just like you to be aware that they know everything. You need to decide why they feel the need to advise you and deal with it appropriately, you will know the people best and can assess what their motives are.
Be polite and listen to them, don’t engage in debate as this will only draw the conversation out even longer and sometimes people just want to feel that they’ve been heard. Getting into an argument is likely to impact on you and make you feel stressed, which is not what you want. Also if the person is a family member or good friend to say ‘well that’s just ridiculous and not helpful” wouldn’t be the best thing to say to them and may make you fall out.
If you get the advice from someone via a text or e-mail you can always ignore it, it doesn’t sound very polite but again it might be better than getting into a debate about it.
The best solution is to say thank you and change the subject (try a subject they are very passionate about which should distract them), if that doesn’t work you can always try saying “thank you but my specialist has already started me on a course of treatment and I want to see how that goes before considering anything else”, hopefully ending the conversation.