I’ve often posted on social media telling people that if they see us out and about, even if we outwardly look very well, we’re not ‘cured’. So I thought I’d address the issue of the fact that despite having lupus we can sometimes have good days. These are defined differently for everyone as we all have varying degrees of pain that we consider our personal ‘normal’.
For some, a good day can mean that we can manage to get out of bed, get showered, have breakfast and not have to nap immediately. For others a good day could mean that they have the energy to go out shopping, or have an evening out and even exercise. A good day for anyone with lupus would likely be considered a bad day for most ‘healthy’ people as most of us don’t have any days when we are completely pain free, just days when we might have more energy than others and (slightly) less pain.
The thing that people without lupus often fail to understand is that lupus may be not particularly troublesome one day and suddenly flare up massively the next, or even flare up the same day. This means that when we get a day where we are able to take part in activities others may take for granted, such as shopping, we grab the opportunity to do it. The problem with this is that we often have to pay a penalty later, so it’s possible that the next day (or several days) will be spent recovering from a simple activity.
Doctors often ask patients to describe their pain on a level from 1-10, 10 being the worst. Personally I’ve never reached a 10, but I also don’t have level 1 or even 2 these days. Apart from lupus as I get older I have developed other conditions such as arthritis, so my days of absolutely no pain are sadly long gone.
But what are we supposed to do? We want to function like other people, so we take a chance and sometimes push our boundaries, even though we know there’s possibly payback afterwards. So on those days when we are participating in life, to have someone say ‘oh are you better now?’ is not at all helpful and shows how little understanding you have of us and our illness.
Please think twice before saying ‘are you cured?’ or ‘but you look so well’ etc. When you live with a chronic, incurable disease those are the phrases we really could do without as it makes us feel you doubt the seriousness of our condition. If you want to say something try ‘is today a good day?’ instead.
I’ve heard of patients having a ‘to do list’ for when they have a good day, prioritising things according to how much energy they had or how much they wanted to do the activity. Imagine for just one minute having live like that, do you still want to ask us if we’re cured?
“I might look great on the outside but my joints are so sore that I get sharp pains in my knees every time I sit down and stand up. When I have a good day, sometimes I try to do too much and overdo it. I have to listen to my body, I don’t have a choice.”
Angie Davidson
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